Where Are We on Dec 31, 2020?

LOTS going on the last couple months. I have made some emotional decisions that I think are best for our future.

Where do we live?

In 2019 before Tom's official Younger-Onset Alzheimers diagnosis, we bought a condo in downtown Dallas in anticipation of our empty nest. When Tom got the EOAD diagnosis, I decided that moving to a three story condo was insane and to stay in our ranch house of 25 years. Then, life gave us a twist. Our ranch house had roof leak and required us to move out to repair ceilings, floors and roof. We moved into our remodeled condo temporarily. Then came the next twist. Tom adjusted exceedingly well and he wants to stay in condo and the boys like it as well. We will call this Condo #1.

The additional consideration is my Dad (Papa) was going to start staying with us more in ranch house to help out. Condo #1 not conducive to that arrangement for him. Then the next twist comes and Papa's landlord in Stephenville informs him that he needs to be out by end of year. So in December we find Condo #2 blocks from us and purchase it for my Dad and move him in yesterday! What a whirlwind.

So. It is with too much emotion that I have decided to sell the only house Tom and I have ever owned and where we raised our family. In my dysfunctional childhood, I moved 16 times living with 6 different sets of caregivers. As a young adult, I moved 15 times before buying our ranch house with Tom. So I moved 31 times in my first 30 years of life. This blog is therapy! No wonder I am so ridiculously anxious and sad about selling the only stable home I have ever had.

How is Tom?

As mentioned, Tom has exceeded my expectations in his ability to adjust to Condo #1 with very little stress. He loves walking on the Katy Train. However, we did get bad news yesterday. Tom has a macular hole on his left eye. He had been complaining of double vision. There is some research to support the proteins associated with Alzheimer's can impact macular health and might even be predictor. We have an appointment with specialist at UTSW on January 8th. I suspect surgery will be required. Ugh.

Tom's daily mental health remains strong as well as his intellect, self-care and sense of humor. He has bad days mixed in where confusion seems more pronounced. It seems that as long as we keep his life stress free and have no expectations that he manages much better. He is vulnerable to any indication that he did anything wrong. He sleeps allot. On mentally taxing days, he will sleep as much as 15 hours and 12 hours is the norm. He is now on both Aricept and Namenda to help cognitive functioning. It is not clear if these drugs help but we succumb to the "it might help so why not" Alzheimer's community thought paradigm.

How am I?

I have allot on my plate with running my business, Tom's health, my health, moving and organizing our affairs for the EOAD. I am unable to mentally distance myself from the COVID tragedy and the alarming American societal issues. I lost a dear friend that I think of daily and miss. And I try to be a good mother, wife, sister, aunt, daughter, friend and community member but often feel I fall short. I do not manage my anxiety in a consistent way.

All this said ... I am grateful for being able to financially support my family and having beautiful homes. I have endless appreciation for our empathetic sons, Tom being Tom (still), my Dad staying COVID free, my brother loving me unconditionally and always there no matter what, my funny nieces and nephew, supportive friendships, our Alzheimer's support group and long-distance encouragement from Tom's sister and niece.

I am also keenly sensitive to the human condition. I suppose a combination of aging, COVID, political climate and American divisiveness has made the burden on our hearts too heavy. I personally know far too many people whose health is not good, mental health is challenging and loved ones have been lost in 2020. So many of our households are struggling. I am not a great philosopher and have no magical answers. And I am scared for my family and many in my sphere of caring. I suppose love, empathy, acceptance and a little help is what we all want to receive and many of us want to give.

What is my 2021 wishlist?

• All healthy
• We sell our ranch house and are settled in our new home
• Tom remains stable and does not decline significantly
• Secure health insurance for boys and me
• Start my CASA volunteering and bring a foster child into my world
• Manage my business to support us and our consultant families
• I figure out how to eat healthy, exercise and achieve good sleep hygiene
• Stabilize my mental health
• Sam and Noah continue to find their path in positive ways
• Spend more time with people I care about
• Travel some
• Write more
• COVID crisis contained
• Human decency prevails

How do we move on?

When the boys where young, most mornings Tom would throw the football with Sam and Noah in front yard as they waited for carpool. This week Tom asked to throw once more with a symbolically tattered football ... 

Walking away in the sunset ... I could not resist - ha! 

Tom throws long to both boys

Tom running to ball and Sam reaching

Sam tosses to Noah

Sam ready

The Football. Many Memories.

Keep'in The Humor

 

What is this? Our family group text.

Context: Yesterday Tom got somewhat lost for the first time. He was on Kady Trail and could not quite locate his landmark for coming off trail to condo. It is the Kalita Humphreys Theater. Sam was "watching" him from the Life 360 stalker app and figured out there might be an issue. Sam found Tom and helped him find right path. Tom has now put name of theater in his phone so he can pull up next time. Fortunately, Tom was not too stressed out about it.

More Context: We have bought some new Smart TVs for our condo.

Conclusion: Tom's sense of humor and intellect keep us laughing!

Right Now: I am listening to Beatles music waft up from first floor Smart TV where Tom is picking at his guitar and Sam is chatting with him. I am smiling.

The Letter

Not the greatest pic of a video on my computer 😉

The Center for Brain Health made these videos of our family last Summer. These are candid reflections from our family on Younger Onset Alzheimer's.

This one with Sam and Noah is absolutely incredible ... The Letter is how I would title this one. I am so proud of my guys: Noah, Sam and Tom 💙(get your hanky while watching - really)

Sam and Noah Understanding

(4 minutes - click above)

And this is us ... My Courageous Husband is my title for this one ...

Tom and Ronda Acceptance

(3 minutes- click above)

Lost

When Noah was in second grade, his teacher helped us introduce the metaphor of buckets to him. Acts of kindness, giving and sharing fill the buckets of others while doing mean things dips into those buckets. We got the kid's book, the workbook and I even created a "cup of kindness" at home to reinforce the concept. Each day we would talk about the buckets of those around us. And, that by filling the buckets of others, then we also filled our own buckets. The real lesson is how to be happy and the impact of positive behaviors on our emotional health.

It is not a complicated paradigm. And I am wired to fill buckets. It is when I am most happy. It is my calling.

However.

I just cannot seem to consistently maintain a trajectory of filling buckets including my own bucket.  I try really hard. But clearly I am doing something wrong because I get whacked down allot. Is it life or is it me? Or some of both?

I intellectually get that it is a mind frame. I do the self talk and create the narrative in my head. I take action. I get on a roll. I put in the right support systems. I am honest and transparent.

And then I am bulldozed back.

The despair of the up and down, the up and down, the down. The defeated feeling. And the wonderful moments mixed throughout too.

And the minutes are passing me by. The finite time I have with Tom. The finite time before my youngest child leaves home.

And knowing there is this person who just wants to fill buckets. Lost.

                 Despair by Dominique Landau

Looking at a Few Wins

Things to be grateful for ... positive focus ... just a few wins:

Repairs by Noah and my Dad: Noah has stepped up to start helping with a few household repairs. Our Condo door bell went kaput. My Dad helped me pick out replacement doorbell kit at Home Depot. We grabbed Tom's tool bag and headed in with determination. Noah did great job with my Dad's input. And we have a working doorbell for $25! May seem small but every little bit helps!

In my Alzheimer's Support Group: A wise caregiver discussed the marriage paradigm where each of us has spent many, many years building skills to execute the marital roles that each takes on and you get really good at your stuff. This division and balance is what defines household harmony. Now, we have to start doing what our spouses have always done and building that skill set late in life. Gonna be honest, I do not want to learn to use a drill!

Music and Tai Chi by Tom: Tom has pulled out his beautiful acoustic guitar and started playing it. He sometimes does this while watching music videos. He has also been doing on online Tai Chi class set up for those with dementia (it was set for one month so hoping they will extend.)

Yoga, 2020 Election and CASA for Ronda: I have been hosting backyard yoga for about three months and am enjoying it way more than I expected (our fabulous teacher, Phoebe, went to college so in process of getting new COVID safe teacher.) The last two weekends I have gotten myself out of the house to be part of Lit-Stick project that places a large post-it sheets on doors with 2020 Election information and I have gotten to do it with my Dad and my friend Susan which was extra fun. We covered 165 doors over the two weekends! AND, I attended orientation to be a Dalls CASA volunteer advocate for abused children, was interviewed and selected! I start CASA training in a couple of weeks.

CASA: CASA stands for Court-Appointed Special Advocates. CASA volunteers are assigned to a foster child as the child advocate. Yes I understand that taking on something else is counter-intuitive to my overwhelmed status. Noah already expressed legitimate concern. We spent two years getting our Foster Care license and were so fortunate to foster three little boys in one year but Tom's EOAD made fostering little ones impossible. This left a HUGE hole in my heart. So taking care of myself involves listening to that voice calling me into the foster care community. 

Return to College for Sam: While we miss Sam, he is super happy to be back at Trinity University in San Antonio living in his on-campus apartment with two roomies. And he has returned to competitive debate with all being online (crazy what we are doing virtually all across the world now!) In the Season Opener hosted by Northwestern, Sam and his partner finished in the top 8! This is tremendous and I am unabashedly proud of him. The college debate topic this year is: The United States Government should reduce its alliance commitments with Japan, the Republic of Korea, North Atlantic Organization member states and/or the Republic of the Philippines by at least substantially limiting the conditions under which its defense pact can be activated. 

Tom enjoying his guitar. Music has proven to be a really important connection for those with dementia.

Prelims included wins over teams from Dartmouth, Harvard, Michigan, Berkley and Northwestern resulting in #12 seed in a field of 126 teams!

After Prelims, 48 teams out of 126 moved to bracket. Trinity made it to Quarters! The Dartmouth team Trinity beat in Prelims ended up winning the tourney. 

Noah figuring out the ringer that goes outside the door.

And Noah for the install!

My Dad and Noah with tool bag planning the work.

We have been so fortunate to take the yoga to the lake on weekends thanks to generous friends at sail club.

Online, in-home Tai Chi for those with dementia. I am hoping the class continues.

Rhetorical Questions

This day I cannot shake the pain

It is actually this week

Or perhaps it is this month

Oh gosh, the truth is years

It sounds bleak

What do people do when it is so heavy?

I built relationships and was good at it

The focus on shared experiences was the priority

Then the stuff of life hits

One, then another, and another

It seems never ending

What do people do when it keeps getting heavier?

I redirected to recover

There was a plan and a path

But each choice evaporated beyond my control

The hole got bigger and bigger

It is overwhelming

What do people do when it feels too heavy?

It is the betrayals and sickness and death

And not just in my home

In too many lives immediately around me

And in our institutions and our country too 

It feels hopeless

What do people do?

Compassionate Care Policy

We have made so much feel so hard. We is defined as society, companies, organizations, America ...

I had another one of those experiences today. We need to cancel memberships due to a combination of Tom's Younger-Onset Alzheimer's and COVID. It has been difficult. COVID impacted the availability of member service resources thus connecting has been challenging for all parties. And I do think we have all done the best we can to connect.

Here is what I think Compassionate Care looks like:

Me: "My husband has ... and he cannot drive .... and cannot get out until COVID vaccine ... and ... and the other factors ... I am so sorry but we need to cancel this membership ..."

My Organization Dream Response: "I completely understand and we are so sorry to hear of your hardship. Please do not worry about this situation any further. We will take care of the cancellation and there will be no additional financial impacts. This is one less item for you to worry about ... we care about you and your family."

This dream model does NOT include multiple emails, voice mails, phone calls and escalations to supervisors and executives.

Maybe this qualifies as a rant. I would rather it be read as a plea. I propose we, collectively, create policies that prioritize kindness and compassion. Let's call it a Compassionate Care Policy. Will people take advantage sometimes? You bet. But why does that even matter? We can accept without resentment that there is some collateral loss in an imperfect world. I truly believe a kinder world is more important and will ultimately provide immeasurable dividends. 

I hear from so many that are dealing with really serious life stuff. I would like to empower people with tools to truly demonstrate empathy. Imagine the front line worker who gets to make decisions that make the world a nicer place and bring smiles on the other end of that phone on that first contact!

So I reacted again today and ended up in tears. Sometimes my fragility "wins" the moment. Ugh.

9.9.59

Today looks like yesterday

What a wonderful day
We wish tomorrow is exactly same
And the day after too

What life is this

A place where we want to stay still

We enjoy the indistinguishable

And hope for endless never changing days

Today marks 61 years

And today we celebrate

September 2.

September 2. In our marriage, Tom remembered the anniversaries. Tom always bought the most perfect cards for all the occasions.

September 2. Today, neither Tom nor I knew it was the day marking 25 years of marriage. Thank goodness Tom's sister sent us a congrats text. Seriously, we would not have even known if she had not.

September 2. I told Tom it was our anniversary. He said with a half grin "It is?" and I was like "Yes it is." We laughed with the sincerity of a couple who have been together 25 years.

September 2. Let's have a special dinner. There is a bottle of champagne in refrigerator. Me to Noah as I explain it is our 25th wedding anniversary "Can you go to TJ's and Whole Foods?"

September 2. Noah calls me three times while I am in the shower. Me to Noah "You decide which caviar. Two of the less expensive OR one of the higher end stuff." "Taper candles, you know that go in a candle stick." "Forget about the candles."

September 2. Happy 25th Anniversary! Noah says with a smile "The last 18 were the best years." What?? Noah explains with sheepish look "I am 18 years old." Groans from Tom and me.

September 2. Call Sam. He answers our FaceTime. Look at this Sam! Sam questions "What is Noah drinking?"

September 2. Best anniversary, truly. We so enjoyed our meal with Noah.

September 2. Tom reflects "25 years went really fast. We have had some really good times." Me to him "We had a really good time tonight and have more good times to come."

September 2. A couple hours after dinner ... Tom to me "I really love you. I do not know what I would do without you." 25 years today on September 2.

A toast with Happiness flutes- how appropriate. Our friend Jeanna gave these to us as a wedding present.

All our favorite fancy foods. Noah did all the shopping and made the bread crisps - so good!

Who knows how long that bottle has been in our fridge or where it came from? It did not matter. It was perfect.

Tom enjoyed The Pour. And the caviar is a super special treat! Tom loves caviar. He introduced me to it during our dating days.

We are ready to enjoy this fun meal that encourages tasting and talking and sharing.

THAT is an empty caviar bowl. Tom REALLY loves caviar and Noah helped a bit too :)

Thank you Cathy ... this was the exact right gift and message as we live with Altzheimer's. We would have missed September 2 without it.

How Is He?

Tom's love for me shows daily when he brings me coffee. Since he cannot go to store anymore, he got quite perturbed with the boys for not keeping the fridge stocked with milk for my coffee! Tom leaves us these notes to express his feelings.

Explaining how Tom is doing is nuanced. General understanding of Alzheimer's is often tied to recognition of people. There are many years of this progressive terminal illness before that impact hits. I will illustrate with recent developments.

For the safety of our family and hers, our housekeeper of almost 30 years has not cleaned our home since March. I send pay her payments a few months in advance so she has no gap in income and can use the advance lump sum to help her financial obligations. I am sure her life is as scary as ours.

Thus, Sam and Noah cleaned one afternoon weekly for these past few months. They learned ALLOT! Sam went back to college last weekend thus we are losing his excellent cleaning skills (ha!) and the many other ways in which he helped our household function. Noah starts online school this week and his virtual meetings have already began. Our home of three must now adjust how we approach the many routine tasks.

I am trying to go at the various chores for keeping our home clean differently. We are going to attempt to ask Tom to help more. We must do it in a way that does not cause him stress and anxiety. It is important for Tom's sense of worth to stay active and that he continues to contribute to the family. This is why the caregiver's role is crucial.

We have to follow some rules:

• Tom helps between 9am and 3pm because after 3pm Tom's brain does not function as well and he usually goes to bed between 7:30pm and 8:30pm
• Shift from one day a week cleaning to doing a little bit each day
• Every task has to be broken down into one simple action at a time (no exaggeration)
• Patience, kindness and a sense of humor is needed at all times (really)

I  started the new paradigm with cleaning our three bathrooms.I broke it down into 6 tasks. I would give Tom one task at a time handing him the right supplies. He would finish each task and wait for me in our bedroom to find him for the next task. Often, he and I had to wait until I had finished a work meeting or email or whatever for me to help him move to the next thing. Finishing the bathrooms was slow going but eventually he did it and the bathrooms looked awesome! And I was super grateful. And we are all helping each other which is the goal.

I do have to go behind Tom and place things back. He cannot hold in his brain where things go. The hairdryer and brush do not go beside bathtub in towel cubby. This phenomena happens all over the house inside and outside.

And each day I have tried to approach other cleaning jobs in same way. One day was clean the kitchen. Another day was to windex the glass doors and windows.

Tom can fold laundry but asks for help on where to put away. He folds towels and stuff in all different ways which is fine! Truthfully, I have adjusted to this as I am one of those people who likes everything "just so" which is my hang up. Well ...truthfully ...  sometimes I do refold ... I cannot resist ... but I am working on it!

Tom is able to load and unload dishes in/from the dishwasher with no reminders at all. However, it is a daily scavenger hunt to find where dishes are placed. Each time I open a cabinet or a drawer or even the fridge, I move dishes and utensils and spices and anything you might find in a kitchen. We rely on humor allot with this one. I only get frustrated when I am in hurry and cannot find something; fortunately this does not happen too much. 

For those of you who know me personally, you know the universe is having a field day with my compulsive organizational personality and obsessive attention to detail - seriously - oh my.

This week Tom took clean sheets out of dryer and tried make a bed himself. He could not get past the fitted sheet. His brain could not connect how to get all the fitted corners on mattress. He calmly let me know and we did it together. Tom is remarkable. He has worked so very hard to not get too down when these missteps happens; he recognizes he is doing the best he can and does not beat himself up. I admire him for this tremendous act of self-care; we can all learn from him.

Tom's ability to hold actions in his brain is not great and decreasing. His spacial problem solving is almost gone. He cannot make any decisions. His brain cannot process at near the speed of the world around him and it breaks my heart to watch his face when he is trying. This is when you will see the tears well up in my eyes.

I do keep saying that Tom is still Tom and he is. His self-care is excellent and he can get through each day independently. His sense of humor and intellectual curiosity is always there. His giant love for his family is completely intact and apparent. For all of this we are beyond fortunate and I am truly grateful.

Alzheimer's This Day

 A typical occurrence for families facing dementia.

When Younger-Onset Alzheimer's hits families, we are typically still in an active phase of life with kids and jobs and robust social lives. One of the impacted areas that is quite time consuming is changing how bills, utilities, online accounts, memberships, subscriptions, etc. are set up. Most of these things require a User ID, passwords and/or PIN numbers. For our family, ALLOT of these things were and are set up in Tom's name on his computer with his multiple email accounts and endless variations of access information. Sam, Noah and I are still changing and shifting various accounts after one and half years! I know it seems crazy.

I am going to use today's frustration to illustrate how we as a society must do better.

SITUATION

Our AT&T security monitoring automated billing did not go through last couple months. Tom had set up this particular service on a new system in 2017.  I am guessing the credit card entered online had expired. Notices went to Tom's email which we did not pick up until today. We were behind two months: July and August.

I tried to pay online but could not because they suspended our account - fair enough. So I started the process of calling customer service. I explained Tom's Younger-Onset Alzheimer's situation thus I needed to make the catch up payment AND to change account to my name. 

AT&T's response was to charge $5 for the phone help, $35 for reactivation and $100 to change to my name. I could accept the $5 and the $35 but the $100 threw me over the edge.  I reiterated the situation of why we needed the name change and the response was "so sorry but we cannot do anything." 

And I am doing all this while listening to a work conference call because these kinds of things usually have to be done 8-5 Monday to Friday with long periods of time on hold. I was flustered and frustrated and in tears. Overreacting? Probably. But this happens so much and this is when caregivers feel VERY alone. Sam, Noah and I are doing the best we can to get these things changed ... we are doing the best we can ... we are trying.

ANOTHER WAY

There is an alternative. This conversation could have been something like this "Mrs. Grimsley, we understand your circumstances are difficult right now. We want to do what we can to help. We will absolutely waive those fees. We appreciate you calling to share what is going on in your life that impacted the delay in payment. Can you spend a few more moments with me making sure we turn your service back on and get your account details changed?"

COMPASSIONATE SOCIETY

When asked what can you do, I would say help us form a society that prioritizes empathy and seeks understanding of the human condition. If you are in a position of influence, create flexible policies that are considerate and kind which may mean reducing profits. Let us all be curious about what others are experiencing; I find that much goes on that is not obvious. So much in conducting daily life seems so much harder than it has to be ... imagine if our first priority was creating a compassionate society.

CONCLUSION

I canceled the AT&T security monitoring service. Now I will figure out if there is another option. 

Huge Sigh.

Clear or Vague?

It is uncomfortable to know what to say when people you care about are going through a hard time. There are those lovely souls who have a gift for comforting others. But many of us are just fumbling through with good intentions.

And it is not always obvious what is going on with people. And even when you do know then you do not really know. Why is this so hard?

How do we show the depth and breadth of our pain and not jeopardize our ability to achieve basic needs?

How can we be vulnerable when that very vulnerability alienates us?

The cumulative effect of trauma is real and it changes you. Sometimes you get so damaged that full recovery seems impossible. Seems is another word for hope.

We are there for others in a way that becomes serial. Person after person until you stop. And then you realize it was really just a lifelong search disguised.

The act of healing can feel like a never ending process in a finite life.

"Eggcellent" Humor

Tom has a progressive brain disease thus things will be in a constant state of change for him and us. I do think Tom's frontal lobe is being impacted some as we are seeing some behaviors that are less inhibitive - teen like. I do check in with him to see how he is feeling ...

Tom says "Some days are better than others. Some days I am in the zone. And others I am far away. Usually a good night sleep and exercise helps, at least I think I am more with it. But if I go without exercise I may feel a bit hazy but hard to predict."

Tom's philosophy is "I do not think each day how am I doing. I do try to notice big things. But little things, you just have to let it go. I focus day to day on the good things like when I get up in the morning I think about the boys being here. When you told me about Sam going back to school then I got sad."

Most of Tom's mental capacity is spent on self-care, thankfully. Independently, he exercises daily, takes his medicine, reads about brain health and prepares food for himself. He just decided turmeric is good for his brain thus found it in our spice drawer and ingesting each day ... I think. He is able to manage watering outside each day, helping clean up kitchen and assisting with whatever we ask. Tom still brings me a cup of coffee most mornings which makes both of us happy!

Tom reflects on his coping mechanisms "I think I am doing a pretty good job bringing humor in. Saying funny things and acting goofy can help." The boys and I rely on humor as well. Like most families, we fall into topics that get lots of airplay. Right now, Tom seems preoccupied with how Sam cooks his eggs which Tom thinks is not optimal. Here are recent Family Group text messages from Tom illustrating his superior egg making skills and still eggcellent use of puns: 

Tom has given me permission to blog about this journey.

Compassionate Communication with the Memory Impaired

I did not write this ... sharing ...

         DON’T

•   Don’t reason

•   Don’t argue

•   Don’t confront

•   Don’t remind them they forget

•   Don’t question recent memory

•   Don’t take it personally

• DO

•   Give short, one sentence explanations

•   Allow plenty of time for comprehension, then triple it

•   Repeat instructions of sentences exactly the same way

•   Eliminate “but” from your vocabulary, substitute “nevertheless”

•   Avoid insistence – try again later

•   Agree with them or distract them to a different subject or activity

•   Accept the blame when something is wrong (even if it’s a fantasy)

•   Leave the room, if necessary, to avoid confrontations

•   Respond to the feelings rather than the words

•   Be patient and cheerful and reassuring. Do go with the flow

•   Practice 100% forgiveness. Memory loss progresses daily

•   My appeal to you: Please elevate your level of generosity and graciousness.

REMEMBER

You can’t control memory loss, only your reaction to it. Compassionate communication will significantly heighten quality of life.

They are not crazy or lazy. They say normal things, and do normal things, for a memory impaired, dementia individual. If they were deliberately trying to exasperate you, they would have a different diagnosis. Forgive them... always. For example: they don’t hide things; they protect them in safe places... and then forget. Don’t take “stealing” accusations personally.

Their disability is memory loss. Asking them to remember is like asking a blind person to read. (“Did you take your pills? “ “What did you do today?”) Don’t ask and don’t test memory. A loss of this magnitude reduces the capacity to reason. Expecting them to be reasonable or to accept your conclusion is unrealistic. (“You need a shower.” “Day care will be fun.” “You can’t live alone.”) Don’t try to reason or convince them. Give a one sentence explanation or search for creative solutions. Memory loss produces unpredictable emotions, thought, and behavior, which you can alleviate by resolving all issues peacefully. Don’t argue, correct, contradict, confront, blame, or insist.

Reminders are rarely kind. They tell the patient how disabled they are ̶ ̶ over and over again. Reminders of the recent past imply, “I remember, I’m okay; you don’t, you’re not.” Ouch! Refer only to the present or the future. (If they’re hungry, don’t inform them they ate an hour ago; offer a snack, or set a time to eat soon.) They may ask the same question repeatedly, believing each time is the first. Graciously respond as if it’s the first time. Some days they seem normal, but they’re not. They live in a different reality. Reminders won’t bring them into yours. Note: For vascular dementia, giving clues may help their recall. If it doesn’t work, be kind... don’t remind.

Ethical dilemmas may occur. If, for instance, the patient thinks a dead spouse is alive, and truthful reminders will create sadness, what should you do? To avoid distress, try these ways of kindness: 1) distract to another topic, 2) start a fun activity, or 3) reminiscence about their spouse, “I was just thinking about __________.” How did you two meet? You might even try, “He’s gone for a while. Let’s take our walk now.”

Open-ended questions (Where shall we go? What do you want to eat/wear/do?”) are surprisingly complex and create anxiety. Give them a simple choice between two items or direct their choice. “You look great in the red blouse.”

They are scared all the time. Each patient reacts differently to fear. They may become passive, uncooperative, hostile, angry, agitated, verbally abusive, or physically combative. They may even do them all at different times, or alternate between them. Anxiety may compel them to shadow you (follow everywhere). Anxiety compels them to resist changes in routine, even pleasant ones. Your goal is to reduce anxiety whenever possible. Also, they can’t remember your reassurances. Keep saying them.

Call the Alzheimer’s Association Helpline if you need suggestions on handling challenging situations. 800-272-3900
© Liz Ayers, A volunteer of the Alzheimer’s Association Orange County Chapter and former caregiver

Alzheimer's and COVID

Tom is 60 years old. He was officially diagnosed with Early-Onset (Younger Onset) Alzheimer's when he was 59 years old. He was diagnosed with Mild Cognitive Impairment when he was 57 years old. Alzheimer's is a progressive terminal illness so he had showed signs for a long time; I guess we would need to say years.

The undiagnosed and secretive years were particularly hard. Those were the years Tom felt like he was loosing his mind and he was letting everyone around him down: work colleagues, family, friends, himself. Those were the years before diagnosis and I kept trying to make things better on every level and nothing worked. My frustration and anger were real. In Fall of 2018, we went public and Tom received the official diagnosis. Everything changed in that moment.

We are in a good place right now and some of that is due to COVID.

• Wills: Right before COVID hit, we completed all new Wills and various legal documents with a trusted elder care attorney
• Finances: I did some research and decided we had a shot at applying for LTD with Tom's prior employer. With tenacity, I started the process and I was meticulous in managing the qualifications and application. Tom was approved and with a retro payment to effective date! To say we were shocked was an understatement. We now have SSDI payments for both Tom and Noah and an additional LTD benefit for Tom. I also found a little known COBRA extension for certain SSDI recipients so we have healthcare until next Spring.
• Driving: Tom was already heavily restricted with driving and COVID sped up (pun intended) the decision for him to no longer drive. Tom was able to make this decision without stress. With COVID, he does not go anywhere so it has no real impact in our current day-to-day living situation. We traded in both of our Prius cars and I got a new hybrid which made me super happy!
• Medicines: Oh man, the management of meds is NOT fun especially with Tom's sensitive digestive system. We have finally got him down two meds for cardiovascular health and back to a therapeutic dose of his brain med (Donepezil/Aricept.). And he is no longer on anything for mental health.
• Vacation: Tom does best when we are in our home of 25 years where all is familiar which is key coping strategy for loved ones with dementia. SO, when we (boys helped!) planned a Colorado social distancing get-a-way last month, we were very thoughtful about how we would go about it. I am thrilled to say all went very well. We had a great time and Tom was able to enjoy himself without too much confusion and anxiety.
• Support: The Center for Brain Health has been our lifeline to our new community: the community of families whose loved one has dementia. We meet weekly on Zoom. When Tom meets on Thursdays, I can hear him laughing and talking. It is important to have friends who really and truly understand.
• Tom's Current State: Tom's physical health is good other than his eating habits being impacted, some loss of weight and sleeping allot. Tom's executive functioning and short term memory continue to decline. His "in the moment" cognitive level is still great thus daily interactions with him feel mostly normal. Thankfully, his self-care is high functioning. Tom's sense of humor and core essence is still there! It is really about meeting Tom where he is and expecting nothing more. When we do this then all of us function peacefully. It is about a life of worth and respecting that paradigm for everyone.

Since March we have practiced social distancing. Sam and Noah do the grocery shopping for things not delivered. We have very little interaction with extended family or friends and when we do it is done with caution and respect for not exposing ourselves to COVID. Sam and Noah have been incredible - truly. It is not easy to be 18 and 20 and not see your friends at all - for months. We did not ask them to do this; this was a decision they made and they manage. If Tom gets COVID, it would be horrific on every level. If I get COVID, the impact to our family and my business could be crippling.

HOWEVER, COVID has given our family priceless gift of time together. I would have never imagined our family of four would have this kind of time together at this stage of Tom's illness when we can still interact in positive and joyful ways.  Both boys have had internships they could do online and remote. Since I work from home 100%, it is much easier for me to be there for Tom in the ways he needs. Right before COVID hit, I was starting to feel quite overwhelmed with the care taking that was surfacing.

The Future

Our simplified approach to staying COVID safe is going to change in near future. Sam will go back to college which will make Tom incredibly sad and we will not see Sam until November. We will worry for Sam's health. Noah will go back to high school for his Senior year - maybe, probably, who knows?!? Noah's private school will be able to execute in a safe way but Noah will still be "out there." Noah also wants to get a job so we will see where that lands. While Tom and I will continue to social distance and Noah will practice safe measures (masks, sanitizer, etc.), we will have to figure out how to manage inside our home as Noah comes in and out. I do not know what our protocol decisions are yet. We will consciously do the best we can to stay safe and healthy knowing the stakes are not only life and death but a potentially tragic acceleration to the ravages of Alzheimer's.

Tom manages his phone very well so likes to watch old favorites, visit museum sites and listen to music.

Making Smores indoors on vacation!

Lots of nice hiking in Colorado!

Voting!

Our Love on Sunday Mornings

Couples who have been together for many years fall into patterns that show their love for each other. Tom and I have ours. Ours are the same and they are changing. As I type that sentence, I tear up.

On this beautiful Sunday morning, Tom brings me coffee in bed in a favorite coffee mug. He has brought me coffee for years. For those of you familiar with love languages, mine is overwhelmingly Acts of Service.

This mug means the world to me. It was a gift by my youngest niece in a difficult year.

And a new act of love has entered our world. On Sunday mornings, Tom fills his pill box independently with perhaps a few questions. Once he finishes, he brings to me to check since we are at the stage where I do monitor to make sure he stays safe. During the week, he remembers to take medications without prompting. I will check with him just to make sure but typically he does well.

Last Sunday, Tom told me he "loved this pill box" and thanked me for getting for him.  I got this new version of the pill organizer for him last Fall when I could see that his medications were not being taken correctly using the one he had. Simple things like this help keep independence longer which is incredibly important on so many levels.

This is an effective organizer for loved ones with dementia. The colors, symbols and dividers with separate lids make it easy to use.

Most of us start with romantic love and I suppose some couples maintain it for a lifetime. Many of us evolve to an enduring love that is shows abundantly in both the everyday things and the inimitable moments.

All We Need Is Love ... Or At Least It Helps

All of this.

I belong to a Closed/Private Facebook Group "Early-onset/Young Alzheimers Female Spouses Caregiver Support Group." It is is a virtual, online Support Group. There are so many personal emotions and thoughts shared in a safe place: devastating heartbreak, joyous celebrations, comedic relief, survival techniques, complete hopelessness, utter desperation, timeless love, intense anger and and profound empathy. Our hashtag is #WeWalkThisTogether

The graphic above was posted in that Group today. Sometimes I am kinda embarrassed that Alzheimer's has brought out an approach to relationships that I could have and should have practiced without a brain disease as the driver. I do recognize that "should have" is dicey emotional ground and can lead to shame which is a spiral to negativity. I am well on my way to accomplishing most of the above with Tom. And some of those behaviors are slowly making their way into my other relationships.

This post is really about love. It is about meeting those we love where they are. It is about the brokenness that many of us harbor and figuring out how to get past it. It is about finding peace. I think #WeWalkThisTogether is what we all really need - right?

We share our very personal story because honesty pulls us together. It binds us. It shows that the human condition is there in all of us.

My sweet solace today is that Tom can write (he composed without any help!) me a love letter for my birthday:

And my love for Tom ... today I set him up outside with his laptop, pillows and covers to watch Temple-Emanu El's morning Shabbat service because I KNOW the rhythms, the sounds, the words and the prayers will ring familiar and make him happy.

I helped Tom set aside his broom and take a moment.

Listening to prayers as they are chanted in Hebrew in Live Facebook connection ...

April with Tom and COVID

Enjoying the outdoors. 

Early-Onset Alzheimer's Disease (EOAD) is a disease of progressive decline. Like others, COVID-19 has interrupted our normal. We seek worth in the day and in the moments.

Tom's state of mind is positive.

• Tom says "I am really happy right now."
• And this "I love watching those movies with the boys."
• And an excerpt from his heartfelt birthday letter to me "I also appreciate you keeping me busy around the house. It greatly enhances my sense or worth knowing that I can still add some value that helps the family."

We have accomplished some practical steps to getting our affairs in order.

• Tom has been approved for Social Security Disability Insurance (SSDI) thus both Tom and Noah are receiving monthly benefits. There is an UNBELIEVABLE two year Medicare waiting period from SSDI effective date (tell Congress that this is not okay!) However, I stumbled across a little known legislative provision that when you have SSDI then you can extend COBRA benefits for eleven months (so many conditions to be eligible - clearly no intent from Congress to make widely available.) So while COBRA is crazy expensive, our family now has healthcare through April 2021. Thank goodness!!!! This is truly a point of great worry and anxiety for me.
• We have signed our wills and associated documents updated for Tom's EOAD right before Stay in Place took hold ... huge relief!
• I am now working on Long-term Disability application with Tom's former employer ... crossing my fingers.

We are also staying connected with our Alzheimer's support group via Zoom. We have a group of eight couples we met in our Center for Brain Health Discovery class last Fall. In this group, the men all have some form of dementia (3 with EOAD, 2 with Alzheimer's, 1 with Parkinson's, 1 with Lewy Body, 1 with Primary Progressive Aphasia.) We meet every Monday morning as couples. On Thursdays, the men meet with a facilitator. Tom is incredibly comforted by this group. It is important that he has a place where honest and safe expression can exist.

Tom's executive functioning and short-term memory are in decline. Imagine .... not being able to hold new information in your brain ... not being able to remember a sequence of two steps just told to you ... not being able to follow a group conversation ... not knowing what to say in group conversation ... losing periods of time ... foods tasting differently ... not being able to process written directions ... brain connectors not processing how objects seen ... fatigue ever present requiring at least 12 hours of sleep per night and naps too ... inability to track a Calendar or anything scheduled ... every action taking SO much longer than normal ...

Also imagine this INCREDIBLE gift before us. We have 7 days a week and 24 hours a day with our young adult children! Tom has this time with Noah and Sam and they with him. They are working their way through super-hero, Marvel and action movies on the Disney channel. Tom is able to relive these theater experiences he has shared with our sons throughout their life. This brings GREAT joy to Tom.

Warning - Frank Convictions Below This Line

We believe Tom is at COVID-19 high risk at age 60 and with diminished physical well-being due to EOAD. We are compliant with all Stay in Place provisions and sanitize everything. Noah and Sam have been so thoughtful and mature. They understand completely that they cannot be out and about which puts us all at risk. I am incredibly proud of them. Honesty, I feel resentful of the Americans including many in my own community who think COVID-19 is overblown, who think a loss of lives is okay and who support leaders without courage. I am fearful my husband will end up on a ventilator and we will be faced with decisions via paperwork we JUST signed with life saving measure directives. Our country is depressingly divided ... I just cannot nor will I ever nor do I want to accept what I read, hear and see daily ... what so many people think is tolerable is incomprehensible to me and fills me with hopelessness. It comes down to loving our neighbor ... that is everything. We are approaching 40,000 deaths in USA since February 29th (!) which is on average over 800 per day which is over 34 per hour. I AM thankful for the brave leaders who have boldly put our safety and truthfulness first ... we would be in much worse shape without their leadership.

Thursday Zoom with Dementia Men's Support Group ... important connection for Tom with an amazing group of loving men.

Tom is cold all the time these days.

Letter to Youngest Son

Dear Noah,

You turn 18 today. For many of your teen years, you have been talking about this day. The day you are an adult. The day you can legally do many things. The day you are in control. You have had a vision for this day. I think your expectations are probably more accurate than either of us would have imagined and certainly for reasons we did not want.

I want to reflect on this past year leading to this milestone birthday. Your teen world has been thrown a tremendous curve ball. Your Dad has Younger Onset Alzheimer's. And you and I have changed as a result. Or maybe we have just evolved to the many levels of complex acceptance.

You probably do not notice how often you shake my norms these days. There are so many moments you caretake not only your Dad but me too. This is way more than actions; it is an instinct to think of us and our well-being.  You help smooth through the rough spots which are increasing as the disease progresses.

This care taking quality has shown strong during COVID-19. Your maturity is remarkable as you have diligently ensured we have the right supplies to sanitize, created a process for keeping the virus out of our home and maintained strict social distancing. You have lightened my worry and have taken on a household responsibility. I am grateful.

Sharing family meals is a value in our home. You have stepped up to fill this gap that surfaced with the changes in our family roles. You provide more than nourishment for our bodies. You feed our souls with your joyful and creative cooking ... and again with the care taking.

Our home is calmer in some ways. My interactions with your Dad are more gentle as we focus on what IS versus what could be. And you and I are in a different place for sure. We are kinder to each other. We have always had a complicated relationship probably rooted in being so much alike. We seem to have arrived at a place of mutual understanding and perhaps an implied commitment to reach under the surface to how we feel. We are a team as you find your way through your last couple years of high school and reach towards your dreams.

You make our home a happier place. I thank you with all my heart.

As we are celebrating in a pandemic, I sent a quick text to friends and family asking for one word for this Youngest Son. This was the result.

It is telling how many DIFFERENT words were chosen for you. You have always sought to command the world around you which has created extreme highs and lows. You definitely learn through experiences and guessing that will always be part of your being.

I am proud to be your Mom. I love you and hope that you know the world is a brighter place in these last 18 years with your light shining bright on all of us!

The Face with MASK is so appropriate!

Birthday Breakfast in Bed! 

Thanks Susan!