Making Moments, Not Memories

Recently I have been thinking a lot about memories.  Too much sometimes.  I pine over the loss of Bob’s memory and cry over the shared memories that are no longer shared.  I can really work myself up thinking about all that Bob does not remember and I feel so sad that I can’t reminisce about past events with him.

My younger sister Marti and her husband Greg recently spent a week on vacation in nearby La Jolla.  They were gracious to spend some time with us and it was wonderful to be with them.  The best part was our shared memories and experiences as family.  We laughed over things that only our family would find funny.  My mom calling the chef “Heavy R” instead of Javier.  My dad lifting his little pinky up when he drank tea or coffee. It was so great to have shared experiences and memories. I have been missing that with Bob with 1 o.

Instead of focusing on memories with Bob, I am now focusing on moments.  Making enjoyable moments for both Bob and myself is my new goal.  Whether or not he remembers these moments (and he usually does not) isn’t going to be my concern.  I want to live in the moment and make those moments count.  I want to show Bob that I love and care for him and make his moments pleasurable.  If later in the day, he doesn’t remember that we walked at the beach or had a yummy lunch at a café, I’ll know that we did, and I’ll also know that he enjoyed the moment. Bob with 1 o may not remember the specifics of our day or week but I’m confident that he’ll have an overall feeling of enjoyment!

One day this past week Bob woke up at 2 am, confused and thinking he had to be ready for family coming over.  He fretted over being late while I tried to convince him to come back to bed and get some sleep.  He got dressed and went to the family room and settled in his comfy chair.  Once he fell asleep, I was able to sleep a few more hours.  Needless to say, it was a rough start to our day.   Once it was really morning, we went to nearby Lindo Lake for a little walk and then on to the Lakeside Café for a nice breakfast on their patio.  It could have been a horrible day if I had focused on waking up early and being disrupted by his confusion.  Instead, I chose to roll with the flow knowing I could fit a nap in later in the day.  My attitude sets the tone for his attitude most times.  That was evident today.  On our drive home, Bob told me several times that today had been a really nice day!  He had forgotten that it had begun with a rough start at 2 am and so did I. What a good moment we both had!

Jeremy Camp sings  a beautiful song titled  “Keep Me in the Moment” and here’s my favorite verse:

Singing Oh Lord keep me in the moment
Help me live with my eyes wide open
‘Cause I don’t wanna miss what You have for me
Singing Oh Lord show me what matters
Throw away what I’m chasing after
‘Cause I don’t wanna miss what You have for me
Keep me in the moment
Keep me in the moment
Keep me in the moment
‘Cause I don’t wanna miss what You have for me

Yes, it will still be hard to not have the shared memories but living one day, one moment, at a time will be my focus.

July 2020 visit from sister Marti and her hubby Greg

HARD LESSON LEARNED

I’m learning more about dementia/Alzheimers than I really ever wanted to know.  My personality is such that I want to read, watch documentaries, attend support groups, join in webinars, take Zoom classes, and dig into the subject.  Do I think I’ll be better as a caregiver if I do this?  I guess.  And that’s my goal—to be a loving, gentle, and kind caregiver to Bob with 1 o. 

But day to day living with Bob is the biggest way to discover what dementia/Alzheimer’s is really like.  No amount of preparing can really prepare you!

I always thought the Bob would be able to hang on to the memories that were important or meaningful.  Doesn’t it make sense that special memories have a special place in his heart, and nothing can erase them? Obviously, I thought those memories would be embedded permanently in one’s heart.  I know when I think of significant memories, my heart feels the love, pain, pride, happiness, joy, and even the sorrow of those memories. Aren’t those memories part of one’s inner core?

Well I can tell you that they aren’t.  They only exist in one’s brain and because Bob’s brain is so atrophied and damaged, those memories don’t exist for him.  No amount of reminiscing, picture sharing, or even praying can bring those memories back alive in Bob’s brain. They don’t exist to him. They are gone just like they never happened.

It’s hard to believe that most of memories of the life we have lived over the last 41+ years is missing in his brain.  He doesn’t know where we met, where we married, where we lived over the years, who are friends were, what we did for fun, what vacations we took, what kind of work I did, what adventures we had with our families, and more. Bob doesn’t know important milestones and meaningful periods of our life.  I get so angry that those memories of OUR LIFE have been erased.  It makes me feel so very sad for BOTH of us.

So, what have I learned about the disease?  Dementia is a mean ugly disease.  It has robbed Bob of so much.  I can’t imagine what its like for him to not have those fantastic memories to look back on.  I’m not even sure what he thinks about his life.  My brain (and heart) are overflowing with significant remembrances that include him and that’s what fuels me to keep going and keep lovingly caring for him.

What fuels him?  What does he reminisce about?  What is he grateful for? What blessings does he count?

“Bob with 1 o” June 2020

Communication 101

communication

noun

1. the imparting or exchanging of information or news

synonyms: transmission, imparting, conveying, presenting, passing on…

2. the successful conveying or sharing of ideas and feelings

There’s little transmission, imparting, conveying going on in our home these days.  The successful conveying or sharing of ideas and feelings is almost nonexistent.  At this stage of Bob with one o’s dementia, this is the hardest thing for me. I’m experiencing  such an odd feeling of loneliness even though I’m sitting right next to my husband.

I’ve been told that dementia/Alzheimer’s causes the person with the disease to only catch a few of the words that are spoken in a sentence.  They just cannot grasp or retain the other words.  So, what they hear doesn’t make any sense to them.  When I say, “can you hand me the TV remote”, I have no idea what Bob is hearing but it’s not enough for him to understand.  He just stares at me even if I repeat the sentence 3 or 4 times.  It took me a while to realize that it was not his hearing (as I spoke louder and louder with each repeat), but it was a comprehension problem. Maybe he does not understand the word remote or maybe he misses several of the words that I say and he only hears “can hand me”.  I don’t know because Bob can’t explain.  I am only guessing what is going on inside his brain that makes a simple sentence so confusing.

When Bob talks to me there are times when I have no idea what he is talking about.  This is especially true when he is tired.  He will tell me something with lots of mixed up words and lots of incomplete sentences.  Even if I can’t understand what he is talking about, I try to show an interest, not scowl, and then respond as best I can. Quite often I say “that’s cool” or “oh yeah” just because I really don’t know what I am responding to. It’s a strange way to communicate. Talk about crazy relationship dynamics!

Bob’s talk often includes rambling sentences, mumbled words, mixed up pronouns, soft spoken words that I can’t hear, and made up words I’ve never even heard before.  Often, he’ll start a conversation and then lose his train of thought.  This really use to frustrate me and make me angry.  I would question Bob as to what he was talking about and ask him to repeat and clarify. A tense “give and take” would occur as he fumbled more and more with trying to find the words as I pushed him harder.  Fortunately for both of us, I no longer try that lousy technique! I’m learning.

An “ah-ha moment” recently made me come to terms with all of this.  Now I realize that Bob must feel equally frustrated when I talk to him.  If he is not able to understand what I am saying or asking, he must think that I’m not speaking clearly. I’m now sure that Bob must think it’s me that is making this difficult for him. Communication just isn’t going to be how it used to be and will only worsen as this disease progresses.  Whether it be that he cannot understand me, or I cannot understand him, it’s going to be extremely hard on both of us.

My goal is to be a loving wife and gentle caregiver and make the best of our days together. I’ll try to speak in clear sentences, use simple terms, NOT use logic or reasoning, and repeat what I’m saying if needed. If sometimes Bob just doesn’t understand or even respond to me, I’ll try to accept that and not overreact.

When Bob is trying to tell me something, I will listen and encourage him to take his time. I will try not to be annoyed or critical. I won’t correct him or walk away in frustration. As you probably suspect, I’ve done all of these things many times, so I know that they don’t help.

I plan on communicating with smiles, kisses, handholding, and lots of good food and slow walks.  If our days end up being spent in silence, so be it. Bob will know what I’m saying.

Celebrating our April 2020 Birthdays!

P.S.  I wrote this blog over the course of a couple of days and I’ve had a chance to think it over before I published it.   I want to clarify that this communication craziness is not 100% of the time.  There are moments and times when we can actually talk.  Usually it’s in the morning when Bob’s fresh and more alert.  The conversations are simple, but they still exist.  I think I’m hyper-focused on the lack of conversations as we are entering our 10th week of quarantine. The isolation has been hard. Pre-Coronavirus days, we had a social life. We loved having friends and family over so that we had the chance to talk with others. Our church outings with family filled a social as well as spiritual void.  Going to the Zoo, SeaWorld, Balboa Park, beach, and movies filled up the quiet moments.  Now the days are long and sometimes boring. I can’t wait to fill our house up with family and friends and once again enjoy the successful conveying or sharing of ideas and feelings! The sooner, the better.

Is this for Real?!

“Reality continues to ruin my life” is a popular quote by Bill Watterson of Calvin and Hobbes fame.

I read this quote recently and my first thought was “isn’t that the truth”!  I wrote the quote down on a scratch pad and have re-read it occasionally over the past few weeks now.  I have had the time to ponder it often as we are on our 7th week of the coronavirus lockdown and we have nothing but time on our hands! This is our new reality.

But, the reality of my life is wonderful. Even though “Bob with 1 o” has dementia, he still recognizes me and always has a smile, a hug, and a few kisses for me. I’m living “one day at a time” and today is good.

We have a lovely home to live in and quarantining here is more than comfortable.  The heat and the AC work great and both have been used during the ever-changing weather we’ve been having.  We have been fortunate to get Vons’s Grocery deliveries regularly and some fresh organic produce from an online Farmer’s Market in Carlsbad.  What we lack has been brought to us by friends and neighbors—we have even had a toilet paper delivery, a hand sanitizer delivery, and an ice cream delivery.  All the essentials!! Isn’t that reality great?

Although we are following “Stay at Home” orders, Bob and I still like to get out for a stroll. We are limited on where we can go with parks and beaches closed.  We have a nice open space behind our home and lately we find ourselves enjoying that area.  Until this lockdown, we did not visit that area much. It is a little gem right in our own backyard.  That’s a reality that is fantastic!

We have FaceTime!  We used FaceTime before but now it really is our favorite way to stay connected.  Bob has learned that he can talk to those faces on the phone and they talk back.  Occasionally he is not sure who they are, but he seems to enjoy the smiles and the visits.  Yes, Bob asks them some “odd” questions sometimes—my favorite was when he asked his granddaughter how her sex life was! Reality provides lots of grins and giggles!

Bob misses going to church the most of all and asks constantly when we will be able to go again.  He misses the worship music and time with family, and of course, eating waffles out afterwards!  But the new reality of “on-line church” is filling in the void with wonderful music and meaningful messages—all in the comfort of our home, in our PJ’s while sipping coffee.  Can’t be disappointed with that reality.

Self-distancing and isolation are a harsh reality but out of it has come renewed connections.  Family, friends, and neighbors are reaching out to us, checking in on us, bringing us treats and supplies, and showing compassion.  What a wonderful feeling it is to know that others think of us. I love that new kinder reality!

So, I am going to toss away that first quote and I think I’ll ponder on this one for now.

Don’t try to escape your reality…

Make it everything you want it to be!

GET A GRIP Susan!

My first career was in the restaurant business. I started as a hostess and then a food server, a cocktail waitress, and a bartender. I worked quickly into a management position. I wasn’t very tolerant of lazy workers, crazy explanations, and lame excuses. In 1979 at an employee Christmas party, I was given a gift of a bright yellow apron emblazoned with big letters which read “GET A GRIP”.

It was a statement I made frequently in response to any craziness by my staff. I would say GET A GRIP and my employee would recognize my displeasure and frustration with their behavior. What did it mean? Cut it out. Wise up. Stop with the lame excuses. Don’t lie to me. Get real. Stop goofing off. Just GET A GRIP!

I have come to realize that that is how I was then and how I am now. I like people with good common sense and a certain level of maturity. I’m not good with people who ask for advice and then not take it. I’m not good with people that have lame excuses for their bad behavior. I am not tolerant of people that make the same mistakes over and over. I am extremely intolerant of people that exaggerate every story or just blatantly lie. I am frustrated by people that don’t accept responsibility for their actions. Given a chance, I would tell people with any of these rotten (as I see them!) behaviors to GET A GRIP!

So now the joke is on me. As his dementia progresses, Bob has become more and more delusional, super confused, and constantly mixed up. His lack of short-term memory causes him to repeatedly ask the same questions over and over. Bob’s lack of long-term memory causes him to not know much of his or our personal history. He sees my suggestions and corrections as my being bossy. Bob’s lack of common sense has him making odd comments. His lack of filter has him telling unacceptable jokes and asking inappropriate questions. Bob tells the same crazy made-up story over and over. He tells lies and thinks they are truths. He recreates history. So many times a day, I find myself thinking, “BOB GET A GRIP”!

But thankfully I don’t say it. Bob can’t GET A GRIP.  Bob can’t control his behavior or change his comportment. Unlike my ex-employees, it is not his fault. Bob has no idea that his behavior is something that I consider to be annoying. It’s just his disease. It’s out of his (or my) control.

So as Bob moves further and further away from the Bob he once was, I must rewire my own old way of thinking and tell myself to GET A GRIP.

Old Habits die hard.

Old Ox Pacific Beach 1979  and today in my kitchen!

Corona-virus, California Lock-down, and the Zoo!

Me: Just a reminder that we can’t leave the house due to the Corona-virus.

Bob: I’m ready to go to Corona with you when you are.

~~~~~~

Me: This Corona-virus issue is getting serious.

Bob:  I hear that they arrested the guy who is giving the pills to people that are killing them.

~~~~~~

Bob: What are we doing today?

Me: We are staying home and self-isolating.

Bob: OK, the zoo sounds good.

~~~~~~

Me: In a few minutes we can Face Time with your daughter Julie and sing Happy Birthday to her.

Bob: Let’s take her to lunch.

Me: She’s on lock down.  We’re on lock-down. Everyone is on lock-down. Restaurants are closed.

Bob: Really?  Maybe if it weren’t raining we could go to the zoo.

~~~~~~

Bob: I’ve heard it’s a candy that is poison and it’s making everyone sick.  I’ve had one in my hand but I haven’t eaten it.

~~~~~~

Bob: My golfing buddies called and we’re meeting them for dinner.

Me:  Restaurants are closed and I never heard the phone ring.  Are you sure that they called?

Bob: Yes, and they will be mad if we don’t go.

~~~~~~

Bob: I heard a little more about the corona-virus.  I promise I’ll be on the lookout and make sure no one poisons our food.  That would be murder if they did.

~~~~~~

Bob: Will we be meeting our Kinfolk (I love that term) at church?

Me: No, Churches are closed but we can watch church on line on my computer.

Bob: Can we meet them for lunch afterwards?

Me: No, we’re on lock-down.  Restaurants are closed.

Bob: OK, I guess we can go to breakfast without them this time.

~~~~~~

Me: we can go for a walk as long as we stay 6 feet apart from anyone and don’t touch anything.

Bob: How about Sea World?

Me: They are closed.  Everyone and Every place is on lock-down.

Bob: How about the Zoo then?

~~~~~~

Me: (while out for a walk) Yikes, something just moved in the bushes.  Maybe a lizard!

Bob: Maybe it’s that bug that is making everyone sick.  Don’t touch it!

~~~~~~

Me: After you empty the house trash you should make sure you wash your hands.

Bob: Why? I washed them when I showered this morning.

~~~~~~

Bob: We need bananas.  Let’s go to the market.

Susan: We are on lock-down.  I’ll see if someone can pick that up for us.

Bob: We need watermelon.

Susan: We are on lock-down.  I’ll see if someone can pick that up for us.

Bob: We need marmalade.

Susan:  We may have to do without some things until we are off of the lock-down.

Bob: We need cookies.  Let’s go to the market.

~~~~~~

Bob: How about we go to the mall and shop for birthday presents for each other.

Me: The mall is closed and we are on lock-down.  Maybe in a few weeks we could do that.

Bob: OK, do you want to go to the zoo instead?

~~~~~~~

Bob: What do you want to do today?

Me: We’re on lock-down.  We’ll just be staying home.

Bob: OK, I’ll take a nap.  If you decide to go somewhere, wake me up.

~~~~~~

Me: Kyle and Elizabeth are quarantined at home as Kyle was possibly exposed to someone that possibly has the corona-virus.  They’ll both be working from home for a couple of weeks.

Bob: Oh when are they coming here?  Can I go with you to the airport and pick them up?
Do you think they want to go to the Zoo with us?

~~~~~~

Bob: What do you want to do for our birthdays?

Me: We’ll have to wait and see if we are still on lock-down.  We might not be able to do anything.

Bob: OK, How about a cruise on one of those big ships?

~~~~~~

And this is just Week 1!!!

“Think of the patience God has had for you and let it resonate to others. If you want a more patient world, let patience be your motto”
― Steve Maraboli, Unapologetically You: Reflections on Life and the Human Experience

And these are just some of the many reasons Bob loves the Zoo!

My Bad

I’m on the phone with my sister Christie and I hear Bob in the kitchen. I’m not overly concerned as he fixes the same meal every morning.

When the smoke alarm goes off, I go to check. Bob couldn’t remember where we keep the toaster waffles so he was toasting my Keto (expensive!) bread and also toasting a frozen turkey burger!!! That was interesting and the dripping grease burning inside the toaster was what was setting off our smoke alarm!

I took the burnt Keto bread for myself and showed him where the toaster waffles were (and always are). I put the still very RAW turkey burger on a plate to microwave it even though Bob was protesting that it was cooked enough.

Lesson learned:

Being in the same house with him is not the same as care-giving.

IMG_9587Time to step up my care-giving game!!!

Reality Check!

Some days this disease of Dementia is so real.  No getting around it.  Yesterday was one of those days.

We started the day with our estate planning attorney.  Since Bob’s neurologist and primary care doctor have deemed him to be incapable of handling his own personal and financial affairs, we needed to make some changes to my Financial POA, Will, and Health Care Directive.  No longer can Bob be responsible for taking care of any financial or personal issues.  I will be signing papers for Bob as his “attorney in fact” and Kyle will become the next in charge if I am not able.  It was such a real moment.  For me.  It meant nothing to Bob.  He mentioned afterwards that he felt so stupid as he had no idea what we were doing at “that office” and had no idea what “that man” and I were talking about.  I tried my best to give a simple explanation ahead of time and afterwards but he didn’t get it.  Further proof that it is time for me to fully take over our affairs.  Reality Check #1.

From there we went to Old Town Mexican Cafe for lunch.  It’s a place with lots of history for us.  We take out of town guests there, have eaten there often with family and friends, and it’s the first place we stop after the airport whenever Kyle flies into town.  We have eaten there for 40+ years.  Bob said he had never been there before! Wow! That floored me.  I tried unsuccessfully to jar his memory by telling him of some of the fun times we had there.  He ended up saying he thought the food was good for him and that the he memories were good for me.  I thought that was so great that he did comprehend that I had memories of the restaurant even if he didn’t.  I thought it sucked that he had none of his own memories of the restaurant. Reality Check #2.

Lastly, we returned home for an afternoon visit from a social worker from Alzheimer’s San Diego.  She came to do an assessment for Bob as there is a possibility of getting a volunteer respite care companion for a few hours once a week.  We are at the stage where I do not feel I can leave Bob home alone.  It seems to have happened so fast and I was praying for a bit more time for him to have some independence. Bob enjoyed the opportunity to visit with “my nice friend” and he told some of his very interesting stories.  Not knowing the real story, his made-up versions of the stories are quite fascinating.  The social worker feels he would be an excellent client for them and they hope to find a Companion Volunteer for Bob that will kindly listen to his stories, engage him socially, and become his friend.  It’s nice to know that some respite help for me is in the works but it’s sad to think that we are moving into a new stage of the disease where I can’t leave him home alone for any time at all.  Reality Check #3.

Side Note: We also stopped at Kaiser to do a Blood Pressure check requested by Bob’s Nephrologist and so I had my own blood pressure checked as well.  Mine was through the roof.  I can’t imagine why!!

So my prayer for the day was, “Lord, as I adjust to the changes in my life, develop new routines, and face a new reality, please give me comfort and hope and guidance.”

Actually this will be my prayer every day.

Just a few of our many visits to Old Town Mexican Cafe!

LIFE IS BETTER WHEN YOU’RE LAUGHING

I’m buying tickets for a matinee and Bob is standing back a few feet behind me.  Another movie goer (older male) strikes up a conversation with Bob and asks Bob what movie we are going to see.

Bob responds that he doesn’t know what movie we are seeing. Bob continues to say that his wife is in charge and he does what she tells him to do or she gets mad.

Movie goer replies that he understands.  He says “I’m married to her sister”.

Bob excitedly responds,  “That’s great. We love Susan’s sister Christie!”

Movie goer looks stunned but quickly catches on that Bob might not have understood what he was trying to imply.  He talks a bit about how his wife is like me because his wife takes charge of everything in their household.

I thought that was it and Bob understood the man’s comment.  So on to the movie.

Two hours later, after the movie, Bob asks me if I have the man’s phone number.  Bob hopes I do so we can call him and see if we can have dinner with him and my sister Christie. 

OH MY!!

The movie was entertaining.  The laughter was good therapy. 

What a great day!

My Guy and His Bossy Wife!!!IMG_3654

Gentle.

At Christmas this year I received a Christmas card with a handwritten message wishing me a happy holiday and a GENTLE 2020.  That wording caught my attention.  GENTLE.  Not happy.  Not joyous.  Not special.  Not blessed.  But GENTLE.   My mind went back to that greeting more than a few more times during Christmas.  Several times, I picked up the card and reread those words.  Focused on that one word.  GENTLE.

Today as Bob and I walked, I asked him if he had made any New Year’s resolutions.  He had.  He was going to try to not say things that upset me or made me mad.   How my heart hurt to hear those words. Obviously I get angry and am unkind much more than I realize if Bob’s resolution is to try to not upset me. Such a sad moment.

So what came to my mind?  GENTLE.

So my New Year’s resolution for myself is for a Gentle 2020.

Gentle in my actions.  Gentle in my words.  Gentle in my heart.

gen·tle1

adjective

having or showing a mild, kind, or tender temperament or character.

“he was a gentle, sensitive man”

Similar:

kind

kindly

tender

benign

humane

lenient

merciful

forgiving

forbearing

sympathetic

considerate

understanding

compassionate

benevolent

kindhearted

tenderhearted

good-natured

sweet-tempered

loving

mild

soft

quiet

shy

demure

modest

humble

retiring

unassuming

still

tranquil

peaceful

peaceable

placid

serene

reposeful

reverent

meek

docile

lamblike

dove-like

 

So thank you my sweet friend for your Christmas greeting.

May you have a GENTLE 2020, too.

US—Walking at Lindo Lake