Last Chapter or Just a Plot Twist?

This might be my last blog entry. My sweet hubby Bob passed away on November 11th and so ends our journey of living with Dementia. Boy, what a journey it was. If you had told me at the beginning that it would get as hard as it did, I wouldn’t have believed you. But it got harder than I ever imagined as I watched my husband slowly fade way over the years and then finally pass away. Dementia is a cruel, nasty, mean disease.

Bob only spent 9 days at the care facility. 9 days where he was looked after and cared for so much better than I could ever have done at our home. The care was top-notch and so loving. He was treated kindly and with the upmost respect. He spent his last days sleeping nearly 24 hours a day. He woke and opened his eyes occasionally but then quickly fell back asleep. He didn’t speak or respond. He only ate a few bites of food (he was on a pureed food diet) every now and then. It was clear that it was never enough to sustain him. It was so hard knowing that he was moving closer each day to his final day.

Hospice added an additional level of care. We were visited by the hospice caregiver, several hospice nurses, the hospice social worker, and the hospice chaplain. All of them made the death process much easier. The hospice caregiver would give Bob a “bed bath” with such gentleness. The nurses made sure he wasn’t agitated and was kept comfortable. The social worker and chaplain wanted to make sure I had all the support I needed. We couldn’t have asked for a better care team during this tough period.

Bob’s final couple of days are all a blur—family coming by to say their goodbyes, a visit from our pastor, hospice visits, and owner and staff from the care facility making sure I was ok—visiting with me and bringing me snacks and meals.

I was able to be with be with Bob as he passed. Quietly without any fanfare. Just breathing one moment and not breathing the next. And just like that his life on earth was over. And just like that, I imagined him with a new glorified body and mind. Oh, I can’t wait to be with him again. The promises of our faith are what sustain me.

But in the meantime, my revised life goes on. Not quite sure what it looks like at this point. But I know it is not a life without Bob. No matter what, that goofy guy won’t be out of my heart ever. No not ever.

My prayer is for the difficult times and sad memories to fade away and leave me with a cache of good memories. Boy, we had so many. Right now, my mind can’t quite move off the past few weeks but every day I find more minutes of the day when I’m not sorrowful.

I’ve been told that there are 5 stages of grief, and everyone experiences them in a different order.

Denial
Anger
Bargaining
Depression
Acceptance

I feel that over the past 4 years I went through stages 1-4 even though Bob was alive. I’ve already experienced denial, anger, bargaining, and depression. All of those in abundance. I’ve done my share of crying and feeling so helpless. I’ve been so mad that Bob had to have such a horrible disease. I’ve had times I just curled up and cried and cried. Times I screamed in anger. There were times I was on my knees begging God to take this all away. I was so lonely and sad even while Bob was alive. I was missing Bob terribly already and he wasn’t even gone. I mourned the loss of the life that I thought we would have, and I grieved over the loss of the person Bob had been.

Am I at “Acceptance”? Maybe. Maybe not. How can I know only 10 days since Bob’s passing? When people tell me I am doing well, I tell them it’s because I have been doing horribly for a long time. I’ve been mourning and grieving for a prolonged period. I’ve moved through all those stages of grief and here I am.

So, Bob with 1 o, what’s the plan? Let’s continue our journey and see where my life goes while I carry you in my heart. Let’s go!

Nothing To Laugh About!

When I first started wring my blog about Bob with 1 o, it was a way to share our experiences with this disease and also share some of the humor, love, and joy we have in our lives. In the past few days, I’ve wanted to write and update all of you, but I can’t find any humor in the situation. So here goes anyway. I hope you feel the love and the joy.

Bob’s disease has progressed to a point where he is sleeping 18-20 hours a day. He is either in his bed or in his recliner. The only walking he does is when I assist him and get him from one place to another. Occasionally, he doesn’t even walk that short distance and I roll him on his walker.

Dementia really has taken a toll on him. But then something new came along to make matters worse, his kidney function greatly declined. He became dehydrated and that threw his one functioning kidney into severe chronic kidney disease. That threw him into even more fatigue and confusion. So, after a couple of days in the ER getting tested in all ways, they determined there was no infection and no other issue with the kidney. Bob was dehydrated and nutritionally anemic. So, he they hydrated him and then he was released with orders to drink more fluids and eat better. That’s a tall order for someone with dementia who has no appetite or ability to understand that he NEEDS to eat and drink.

They also did swallow tests on Bob and put him on a soft food diet. They are concerned he could aspirate food into his lungs. They also had to sedate him and have a “sitter” in the room with him as he was extremely confused and agitated during his hospital stay. A few medications were changed, and he was taken off his Pradaxa (blood thinner) as he is a fall risk. The doctor in the ER talked with me candidly about Palliative Care and Hospice Care. More difficult matters to ponder.

I have had Bob on a waiting list at a Memory Care Facility in Alpine since August. It’s a small popular highly recognized facility and there aren’t openings often. But on November 1st, prayers were answered. There is a room available, and BOB IS MOVING IN THERE TODAY. He’s sleeping right now as we’re awaiting the medical transport van to arrive. I’m writing instead of pacing…

On top of that blessing, the Hospice process was started. They jumped through hoops to get Bob evaluated, approved, and signed up. So, Bob will not only be getting great care from the staff of the Alpine View Lodge, but he will also have the extra layer of care from the Hospice nurse, health aide, social worker, and chaplain. Blessings upon blessings are coming our way.

Had Bob not had the decline in his overall health and the ER experience, I might have felt that I could take care of him at home with some intermittent help. But God, in all His wisdom, wanted to clearly show me that Bob needs more care than I can provide. I’m convinced now that Bob needs to live in the care facility and I’m confident in that decision. That doesn’t make it any easier. I’m still going to have that little voice in my ear questioning my choice, but the voice will be softer and easier to ignore!!

And to all our family and friends that have lent a listening ear and a caring heart—GOD BLESS YOU!!

And to myself, it’s ok to be sad after making the right decision.

PS: Bob slept the day away in his new room while I moved in his clothes, personal items, TV, and a few pictures. It was hard to walk out of his room and go home tonight but I know that he will get the care he needs there 24/7. And I’m looking forward to a great night’s sleep. Tomorrow I will meet his hospice nurse and the hospice chaplain. And I get to be a wife visiting my husband and I don’t have to be his caregiver. Now that’s LOVE AND JOY!

Helicopter Wife!

I did move Bob back home after 9 days. I think the memory care facility was inattentive, understaffed, and uncommunicative. They probably think I was a worrisome helicopter wife–hovering over my guy!!

I don’t know if my expectations for his care were too high, but I felt the assurances given about the level of care Bob would receive were not met and that I could take better care of him at home. I could give lots of examples on their lack of care but trust me, Bob wasn’t getting top notch attention by any means.

I packed up his little bedroom into laundry baskets and black plastic bags and home he came. The first few days at home were some of the worst days we’ve ever had. Change is hard for folks with dementia and the bouncing to the facility and back again must have thrown him into a bit of a chaos. I questioned my decision to bring Bob home repeatedly. Questioning my decisions seems to be a common occurrence.

But now that Bob’s been home for nearly 2 weeks, I realize that it was the right decision. It’s hard to be responsible for him 24/7 but I think it’s easier than worrying 24/7! Now if I could just get him to sleep at night instead of the day.

Even though I still feel that he’ll need the care provided by an assisted living/memory care facility, it will need to be “the right place”. So, Bob continues to be on the waiting list for that place and I will do my best to take care of him in our home until there’s a room available for him. Waiting on God’s perfect timing. Patiently.

Psalm 27:14 “Wait for the Lord; be strong, and let your heart take courage; wait for the Lord!”

Bob with his son Steve at the care facility~~~~~~~~~~~~~~~~~Bob with his daughters Shelly & Julie at our home

“Will You Still Love Me Tomorrow?”

It’s been a rocky road. Did I expect differently? Everything about this disease is horrible. It not only has affected Bob, it’s also been life changing for me, Bob’s family, my family, and our friends. There’s no normal anymore and everyday can be a challenge. My mantra has become “Dementia Sucks!”.

I had written before about putting Bob on a waiting list at my preferred Memory Care Facility. I was hopeful that something would open up soon and he would be getting placed. That’s not happening and Bob’s need for professional care 24/7 is increasing. And my insanity is increasing.

So, I shifted gears and made lots of phone calls and did some tours of other facilities. I chose a small warm welcoming Senior Living Facility in La Mesa. Not as close to Alpine as I would like but everything else about it was great. They were willing to do a respite/trail period so that I can keep him on the wait list at the Alpine facility. This move doesn’t have to be permanent if it does not work out. That was reassuring to me.

The ton of paperwork, assessments, doctor’s appointments, and general preparation that ensued was enough to make me go nuts. But I got through it and Bob is moving into his new home today. Yes, today. Hard to believe that the car is packed and ready to go and that I’m calm enough to be writing this blog. He’s still in his PJ’s, sound asleep in front of the TV in his recliner. He knows nothing of the move later today.

The day that I made the decision and placed the deposit was the worst. Even with prayer, family support, and the head knowledge that I was doing the right thing, I still had a heavy heavy heart. What is so strange, is that Bob told me that he loves me about 20 times that day. So out of the norm for him to repeat “I love you” over and over throughout the day. It made me think that he was trying to give me a message that he didn’t want to move (even though he doesn’t know about the move) or that he really needed to be with me. His verbal outpouring of love really touched me that day and I started to question my decision even more. If that’s even possible.

I told Bob’s sisters about this and they both had such great insight. Pam said that it was Bob’s way of reassuring me that he loved me no matter what and that he would always love me. Even if we lived apart. Colleen said it was God speaking through Bob to give me His love and support. Of course, I cried as I soaked in their thoughts. Their take on Bob’s uncommon outpouring of love, was very reassuring.

So today is move in day.

The question is “Will Bob still love me tomorrow?”

Welcome September!

I made a lot of decisions in August.

I started with a private caregiver coming to our home a couple of mornings a week so that I could go to a Jazzercise class. BOTH are working out GREAT. I’m a klutz on the jazzercise floor but it’s great to get a good workout and clear my head. But most importantly, Bob and caregiver Nicole do well together. She just sits with him while he dozes off and on in his recliner. She fixes him his breakfast. Occasionally she can get Bob outside to walk with his walker but not often. He’d rather sleep. It’s sweet to see how he’s taken a liking to her, and he is always pleased to see her and has no concern about me leaving. What a blessing. Thanks Nicole!

Then I met with the administrator of a local residential memory care facility. Big step. I had a long list of questions for her, and all were answered. I’m a planner and I like to be able to know what lies ahead if Bob needs to live in a care facility. It was such a helpful meeting for an organizer like me. My sister Christie went along with Bob and me so that I had someone else to listen to the answers and ask about things I forgot. And give me support. Thanks Christie!

My biggest takeaway was something that was said at that meeting—I will question and have guilt over every decision I make from here on out. There’re no more easy decisions ahead. To have doubt that I’m doing the right thing for Bob and me is the new norm. I just must learn to quiet that voice that constantly chirps in my ear questioning my every thought and move.

At the administrator’s suggestion, Bob has spent some time there throughout August without me. A little respite care for me and a little time for them to evaluate his behavior and assess his needs. Bob’s disease has progressed to the point where he doesn’t seem to miss me or be concerned about me being gone. As sad as that is, I’m glad that he wasn’t there worrying about where I was or wondering when I would be back. The staff tells says he’s cooperative there and he’s welcome for daycare anytime. What a huge relief to know there’s a haven for Bob when I have appointments or a place to be where I can’t take him. My blood pressure and stress are already better!

Then I put Bob on their waiting list for a room. What?! Yes, I put Bob on their waiting list for a room. Am I really ready for that? Is Bob at the stage that he’s ready for that? I always had a benchmark in mind as to when I might consider placing him in a memory care home and he’s not at that benchmark yet. But where Bob is right now is crazy hard. I just am not sure that I’m able to care for Bob at home and I’m vacillating on just what to do. I never realized how hard caregiving for a person with dementia would be. I know that sounds ridiculous, but I seriously thought I would be able to deal with anything and everything that would be part of caring for my hubby. NOT!!! This is quite the wild ride and I’m not sure I can stay on it!

I have always said that I won’t make any big decisions while I’m tired, anxious, stressed, angry—but guess what? I’m tired, anxious, stressed, and angry every day.

There is no available room for Bob at this time and I have no idea when a room might open. That’s probably good as I’m not sure if we’re ready to take this step. I do know that God has a plan for Bob and for me. A room will open at just the perfect time. I’m trusting in God’s perfect timing.

So, let’s see what September brings!!

Proverbs 6:19
In his heart a man plans his course, but the Lord determines his steps.

Me Time, Oh Me Time!

Oh, to be 40 pounds lighter or 40 years younger. Or both!

I’ve started taking a little me time since my last blog. I needed a little break from being with Bob and I didn’t need to go shopping or dining. I needed exercise. BADLY. Not sure if I was thinking clearly but exercise seemed like a good idea.

First step was finding a caregiver to stay with Bob. A text and a phone call, and voila! Nicole is a “shirt tail” relative who is a CNA with a kind soul staying with Bob a few mornings a week for a couple of hours. They seem to have hit it off well. Bob thinks she’s a granddaughter and we just go with that. She’s not a shy or timid woman. She speaks right up and jumps right into whatever Bob needs. She’s gotten him outside for a walk a few times, she fixes him breakfast, and she keeps him company while he dozes off and on in his recliner. Bob even cooperated with her supervising his shower one morning. Miracles do happen. Nicole’s got such a kind heart and I can tell she is a caregiver who cares!

Next it was deciding what kind of exercise to do during the time Nicole is at our home with Bob. I signed up for Jazzercise classes. Who do I think I am? Cheerleading in High School is ancient history. Dancing only takes place every so often at a wedding. The last time I exercised, I wore a leotard and leg warmers. My two new knees haven’t ever skipped, jumped, or kicked. But I signed up.

So now I’m 6 classes in. Have I improved? So slightly that I’m not sure. Am I enjoying it? YES! It’s close by our home, the women are warm and welcoming, the instructors are encouraging, no one is judgmental of my ability (or lack of ability), and it’s the only time of the day when I’m not thinking or stressing about Bob. There’s no room in my brain to worry about Bob while I’m trying to releve’, chasse’, and do pulsing hip extensions.

So, thanks to all of you that encouraged me to carve out a little time for myself. Sometimes it’s that first step that’s the hardest. It’s nice to be trying something different and stepping out of my comfort zone. I hurt in a million places. I feel totally inept. But I like it! Thanks for the shove…

Parenting Round Two

I have only one child with Bob. I have many stepchildren, grandchildren, and great grandchildren but only one child that we had and raised together. I can say without any doubt that Kyle was the easiest child to raise EVER. No drama. No behavioral issues. No terrible twos or threes or even thirteens. Just a fun, well behaved, enjoyable kid. He was a joy to parent and at 31 he is still a huge blessing in our lives. I only tell you this so that I can explain why I am not doing well in handling what is going on currently in my life. I have no training!

Bob has gotten to a stage where he always needs supervision. It’s been a few years since I stopped leaving him home alone, but it has morphed into my need to be by his side or in the same room. If I do not watch over him like a hawk, then crazy things happen. It’s hard to imagine that he’s my husband. I feel I have another toddler to care for.

Here’s a rundown of the last week:
• Threw his socks and underwear in the trashcan instead of the hamper. Several times throughout the week.
• Spilled large mugs of coffee on himself, his recliner, and the area rug—actually 4 times this week.
• Put meals that he didn’t finish in the pantry. Boy did we have ants from that!
• Wiped dirty plates off with a napkin and put them back in the cupboard.
• Hid a cup of coffee in the cupboard behind the trashcan so that no one would drink it overnight. Of course, it ended up spilling and making a mess.
• Filled the bathroom sink with shaving cream instead of putting it on his head/face to shave.
• Cut the top off several Keurig pods and just dumped the coffee in his cup of coffee to make it taste better. And grittier.
• Emptied the dishwasher and put away the dishes. Would have been nice but the dishes hadn’t been washed yet.
• Heated his coffee in the microwave for 6 minutes instead of 60 seconds so that it boiled over and made a puddle of HOT BOILING coffee in the microwave that nearly burnt him. This is a repeated offense.
• Hid his wallet, handkerchief, and hat so that they wouldn’t get stolen by the imaginary people who are staying here and then in the morning he couldn’t remember where they are hidden and was convinced that they were stolen. This too is an ongoing situation but when he hides the wallet when I’m not watching then we both are hunting for it the next day.
• Moved some furniture in the living room and guest room out of the way to accommodate more imaginary people that needed a place to sleep that night. At least he’s kind and accommodating to these people in his delusions!
And then this morning…
• He cut off his beard with scissors!

While these things happened, I was home but obviously not paying close enough attention to all that he was doing. I was nearby in the shower when he started to cut off his beard but by the time I grabbed a towel and hopped out to stop him, it was too late. There was no turning back. He no longer has a beard.

So, in my defense, I never imagined that I would have to treat my husband like a toddler that needs constant supervision. Due to our well-behaved son, I am ill-prepared for this stage of caregiving to my hubby. This is all new to me!

But I’m learning. I’ve now hidden the scissors. I’ve put childproof locks on bathroom cabinets where there are medicines. I follow him into the bathroom. If he leaves the room, so do I. My neighbors know to tell me if they see him outside. I buckle and unbuckle his seat belt. I taste his food to make sure it not too hot. Like a worn-out mommy, I’m happy he takes naps and sleeps through the night.

I’ve also realized that even though people like helping and babysitting a well-behaved cute toddler, “Bob-sitting” a badly behaved 83-year-old is NOT something they will volunteer to do!

So, THANKS Kyle for making my parenting job an easy and gratifying one. Although I’m not prepared for the task at hand, at least I didn’t have to go through this madness before. Once is plenty.

But for now, I’m off to bed.
Mommy tip #1: Sleep when your baby sleeps.

BEFORE~~~~~~DURING~~~~~~AFTER

The Times They are a-Changing or Should I Stay or Should I Go?!

Our walks became strolls and then our strolls became stroll/sit. Then they became sit/stroll/sit with the emphasis on sit. Now our walks are nearly nonexistent. Bob’s so tired and quite often just refuses to get out of the car. He’s been using the rolling walker for quite some time, but he doesn’t connect with the reason he needs it. Instead of realizing that it’s giving him support, he thinks it’s a burden because he has to push it. He shoves it at me and says, “you push it”! I think the next step will be to try using the wheelchair. I think he’ll fight me on that and just prefer to not go anywhere but we shall see.

That will be a story for another day.

I had three times in a one-week period where I decided to leave Bob at home with someone “Bob-sitting”. I went off on my own. Just me. It was crazy just how guilty I felt to not include him in what I was doing.

On the first outing, I took great granddaughter Aubri (from Texas, visiting family in SD) to SeaWorld. It’s always been a special place for us three—mainly for her and her great grandpa. Bob used to ride the rides with her, and I wouldn’t! But I knew that Bob wouldn’t be able to walk or enjoy a long day there, so I went without him. Aubri and I had a great time but still I felt like I was cheating or sneaking out!

On the second outing, I went to a dear friend’s memorial service at Miramar National Cemetery followed by a luncheon. Knowing that I really wanted time to visit with my friends and knowing Bob would get restless, anxious, and need my undivided attention, I opted to again get someone to stay with him. I went on my own. Every time someone asked me how Bob was doing, I choked up a bit and probably had a few tears in my eyes. Guilt Trip.

Lastly, I attended a funeral and a reception. My decision to not take Bob was based mainly on his current social skills. I really didn’t want him yelling or being disruptive in their church or taking out his false teeth at the luncheon. Call me uptight but that just wasn’t how I wanted to spend the day—being on edge over his behavior.

So, all in all, I had three nice days spending some time on my own. But I also felt thoughtless about not wanting to take him. It’s hard to take him places and just as hard to leave him behind. Or maybe ALMOST as hard to leave him behind. I’m still glad that I made the choices to go alone.

So how did he do with me being away? GREAT! My sister Christie had the “Bob-sitting” duty for the SeaWorld Trip and for the day that I went to the memorial service/luncheon. She also did triple duty and did the morning of the day I went to the funeral. She stayed until Bob’s son Steve could get here for the rest of the afternoon. I’m so very grateful to them both for helping us out and holding down the fort while I was away from home. No sure why I fretted over it as I don’t think it troubled him at all! Bob did just fine with both of them and except for a few funny stories there is no drama to report on. Whew…

So, the times they are a-changin. More and more, Bob won’t want to go anywhere, or I will choose to not take him some places. We’ve been attached at the hip for so very long that any separation seems foreign and uncomfortable. I know that I should give myself permission to have a little free time and self-care, but it feels a bit wrong to leave my hubby behind.

This might tell you just how happy (or delirious) I was to be out and about on my own—when I saw my good friend at her mom’s funeral, I told her “There is no place I would rather be”. What a dumb statement! It wasn’t at all what I meant, of course. What I meant was I was happy to be able to be there with her and happy that I didn’t have to bring Bob along with me. I’m sure she thought I was a bit off my rocker with how I phrased my thoughts! Thankfully she’s a dear kind friend and understood my craziness.

So here we go on a new chapter of our dementia journey.

And the question remains. Should I stay or should I go now.

Great Granddaughter Aubri and myself~~~~SeaWorld~~~~~June 2021

Love Locks and Laughs

When we are out for our strolls, running errands, or eating in restaurants, Bob often sees people he knows. He really does not know them, but he is sure he does. He waves at them, he talks to them, and he shakes their hands. Bob even has taken up waving to the piano player/vocalist in our church choir during the worship songs.

Most of the time, Bob thinks he knows the person from the Army or the Navy (he was a Marine), or from the company (not sure what that its), from when he played for the Chargers (NOT!), or from the Police Department (YES!). Sometimes he’ll just point to people and say, “Who is that?” “Is that someone we know?” Rarely is it someone we know. But in his mind, everyone is someone he knows. From the ticket taker at SeaWorld, the person in the car next to us at the stop sign, to the couple walking by us at the beach. He either knows them or has worked with them. When he approaches them, it leads to interesting conversations but thankfully, most people are kind and listen politely to his rambling. I think it’s becoming more obvious to people that he’s off base a tad bit.

While walking across Cabrillo Bridge at Balboa Park this week, Bob stopped to check out the padlocks that have been attached to the bridge. I have attempted several times to explain that couples lock these padlocks on the bridge and throw away the key to symbolize their love and commitment. He continued to to be puzzled over the locks. Eventually we moved on—or so I thought!

We were only a few steps away from the locks on the bridge and a man approached us from the other direction and passed us by. Bob turned and started going after him (slowly with his rolling walker) hollering loudly “Sir, Sir, Sir, Mr. Master, are you Mr. Master?” “You’ve left something on the bridge.”. The man must have felt that Bob was coming after him for he picked up his pace and scurried away. Thankfully, Bob stopped pursuing him and stopped hollering. Boy was I puzzled as to what that was all about. Bob eventually was able to explain that that man was Mr. Master and he had left something on the bridge.

It took me a few seconds to figure out what had just happened. It was a MASTER Lock on the bridge!!!

So, I had a good laugh (at Bob’s expense, I guess). Bob did not laugh as he was worried that Mr. Master had lost his lock!

Hopefully if you are ever in Venice, or Paris, or some of the famous places with bridges covered with love locks, you’ll think of Bob with 1 o and have a good laugh, too.

Making Moments Matter

Back in August of 2020 I wrote a blog about no longer making memories with my hubby but making moments. At the time, I thought I was coping just fine with the fact that I was no longer creating any memories with Bob. Well, I can tell you that I haven’t been coping very well. This living in the moment concept is hard. Darn hard.

Recently Bob’s short term memory has become even shorter. Maybe even non-existent at times. What happens on Monday is forgotten on Tuesday. What happens in the morning is forgotten by the afternoon. What happens at 8 am is forgotten by 9 am. It’s not all the time that this happens but it has become more often than not.

Bob loves to get out and go for a car ride or a walk. If we go somewhere in morning, he’ll wake up from an afternoon nap and ask me where we are going today. If I tell him that we are staying home because we went on an adventure already today in the morning, he looks at me in disappointment and disbelief. No memory of this morning’s moment remains!

Bob has been so eager to go back to church. Watching online just didn’t satisfy him plus he loves the time at church with family. And of course, he likes going out for a meal after church. It’s a time he really enjoys. So now we are attending church again. It’s been wonderful and I know Bob is enjoying it. But sadly, later in the day or the next day he will ask me when we are going to church. I point out to him that we did already go and he just blankly stares at me. He tells me that I might have gone but he didn’t and he tells me that he really wants to go. If I say we aren’t going because it Monday, he gets so mad that he missed church and that I didn’t take him. It makes me so sad that he can’t remember that we were just there. It’s also hard to deal with how mad he is at me for not taking him. I can even remind him of who went with us, where we sat, where we went to eat, what he had to eat, etc. and NONE of it rings a bell. It’s a moment that is gone.

We’ve had some nice times with family lately now that we are living our post vaccination life. Bob is so happy to be able to spend time with his kids/grandkids/great grandkids but by the time the next morning rolls around he is asking if we have plans to see any of his family. It’s heartbreaking to me that the memories are truly just moments that just quickly dissipate.

I understand this in my brain but not in my heart. I know that his short term memories are fleeting but to see just how quickly those moments disappear is so hard on my heart. I want to create moments for him that bring him happiness and joy. But I also want him to remember those moments. Even if its only for a short while. I am not ready for this stage of his disease.

I still feel that Bob benefits from being with his family and friends even if afterwards there is little or no memory of the time together. I think he has a good feeling of being loved and cared for and that’s important. For Bob and for me.

So living in the moment has become a very real thing. I need to stop thinking about how good it used to be. I need to savor today’s precious moments. I need to make today’s moments matter. No matter how fleeting and brief they are for Bob. Prayerfully, these moments will become memories that will last a lifetime for me.

The best portion of your life will be the small nameless moments you spend smiling with those who matter to you most.
Auliq Ice