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?”
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.
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…
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.
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.
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.
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.
I saw a YouTube video recently that said that a good way to describe Dementia is to get a big chalkboard and write down all the things that the person with Dementia can do. And then every day, erase one of those things. Boy, that’s real. And so sad.
In my mind, I took a quick inventory of some of the things that “Bob with 1 o” can no longer do on his own. Driving, using a cell or land line, handling his medications, operating the washer and dryer, recognizing the sound of the doorbell or smoke alarm, using the TV remote, understanding a menu, carrying on a conversation that makes much sense, and so much more. The list of items erased would be long and a bit daunting. So much of the chalkboard would be blank. Little by little Dementia is erasing Bob.
So, I flipped a switch in my head and thought I should make a list of the things that aren’t erased from that chalkboard.
Bob still knows me. Most of the time. Even the rare times that he forgets my name he seems to know that he cares for me. He smiles and greets me happily when I enter the room and he is eager to give me three kisses in a row. That’s his habit and he hasn’t forgotten that!
Bob still has a deep love for his children, grandchildren, and great grands. Most of the time he has them all mixed up by age and name, but he still speaks proudly of them and any mention of them brings a smile to his face.
Bob loves his home and feels extremely comfortable here. He doesn’t remember where he has lived before here but daily, he mentions how much he loves this house. I take that as a WIN!
Bob has fond memories of his career on the San Diego Police Department. His stories don’t align with reality very often (he was the police chief of whole United States, he was on the department for 502 years, he has the largest retirement income in the whole world, etc.) but the memories are positive and he has a good feeling about that time in his life. He did love his job and went to work eagerly back in those days. I’m glad he has upbeat recollections even if they’re all very mixed up!
Bob still likes to have an “adventure”. Although our bike rides and long walks have been replaced with short strolls with lots of sitting, Bob still enjoys the places we go. Even if it’s a place we have visited many times like Lake Murray or Mission Beach, it seems new and exciting to him. Often, he asks me how I heard about these places not realizing that we’ve been there many times before.
Bob loves sweets and desserts. Some things just don’t change. Daughter Julie recently named him Cookie Monster!
Bob loves his “stuff” and can’t leave home without everything he thinks he needs. And then some. Many years ago, he used to say “Spectacles, Testicles, Wallet, and Watch” and he would check to make sure he had everything he needed when we left the house. Nowadays he continues to be so worried about having what he needs so he takes too much—3 pairs of gloves, 4 face masks, numerous handkerchiefs, his wallet, a money clip, house keys, loose coin, and a non-working Fitbit. Always a jacket or two. And of course, a baseball cap. What was once an organizational trait is now a disaster. He has so much stuff jammed in his pockets that he can’t find anything or remember what he even has with him!
Bob still is an avid TV watcher. Just nowadays, he pays no attention to what he’s watching. A Spanish informercial, daytime soap operas, and sporting events of sport or teams that he doesn’t even know. He calls most programs “the news” even if they are Judge Judy or Doctor Phil. Sometimes he watches for hour upon hour without any sound. I don’t mind. I like the quiet time.
Bob still has Jesus in his heart. This is the biggest constant and I pray that his faith only grows stronger and doesn’t get erased off that chalk board. He enjoys telling people that he wakes up every day and gives thanks to God for letting him live another day. When we say grace at a meal, he’s quick to add his own little version of “Come Lord Jesus be our guest”. He has a sweet childlike faith that shines through the dark cloud that hovers over him.
Will more and more things get erased off the chalkboard? Absolutely. Dementia is progressive and it seems to be picking up speed as it rolls along. Steam rolls along. Steam rolls along down a steep hill.
As I type this, I’m focusing on the Bob that is still here. Changed. Altered. Different. But still Bob.
I’m not mourning the losses or thinking about what’s been wiped off the chalkboard. That’s too painful. I think a big part of my journey with Bob’s journey is accepting the fact that things will never go back to what they used to be. I’m working on that.
Thanks for being on this journey with me. You surely have been a huge blessing on this bumpy ride.
Bob’s many things…
Organized and ready to go before he jams them all in his pockets!
I have endured so much. Does that sound dramatic or what?! Every day is a challenge with the repetition of questions, the confusion, the forgetfulness, and the delusions. I feel like I can roll with the flow pretty darn good. It’s been a learning experience, but I’ve learned to not try to reason with Bob or to change his mind. If he doesn’t want to eat, he doesn’t eat. If he wants cookies and M&M’s three meals a day, then that’s what he has. If he wonders who I am and why I am sleeping in his bed, I try to make a joke of how lucky he is to have such a beautiful woman sleeping next to him. If the tells me that he was on the Police Department for 502 years, I congratulate him for a long and happy career. If he wants to watch a Spanish infomercial and call it football, I don’t change the channel. If he wants to wear the same clothes three days in a row, I wait until he falls asleep and then I set out clean clothes for the next morning. If he wants to have my deceased parents over for dinner, I tell him that they are coming soon but not tonight. If I must remind him to put on his mask 100 times, I just do it.
But today I snapped. What was it that caused me to have a huge meltdown and end up crying out for God to help me? What was it? Bob wouldn’t brush his teeth. He claims he has never brushed them before, and he doesn’t know how to do it. Bob says the toothpaste doesn’t smell good and he doesn’t want to put it in his mouth. I dug through the cabinets and found three different types of toothpaste thinking one of them would be the one to spark an interest in brushing his teeth. Nope, none of them was want Bob wanted. So, he methodically and slowly shaved, showered, doused himself with aftershave, sprinkled powder everywhere, and put foot cream on his feet. But no, he didn’t brush his teeth. I know tomorrow he might but still today, he refused.
I did all the wrong things. Tried to reason. Tried to explain. Tired to use logic. Tried to appeal to his common sense. Raised my voice. Got in his face. Tried to convince him that I knew what I was talking about. Tried to convince him he was confused and mixed up. Wrong. Wrong. Wrong.
So now, I’ve climbed back down off of the ledge I was teetering on and I’m calmly thinking about today’s issue. You would think I would have learned by now that whatever Bob does and says is out of his control. It’s the disease’s fault and not Bob’s fault. Being upset with him is a waste of my energy and trying to reason, cajole, or persuade is a total waste of effort. Some lessons are hard to completely learn.
God knows what Bob needs and it is NOT brushing his teeth daily or fighting over brushing his teeth. Bob needs a loving kind wife who cares gently for him in difficult moments. Thanks for answering my prayer when I cried out.
Next time, God, I’ll remember to consult you first!
Do I really want to know what is going on in Bob with 1 o’s head? It’s so hard to know what he’s talking about a lot of the time. He either mumbles, uses incomplete sentences, or just mixes things up. He’s super repetitive, his comprehension is slow, and he’s more and more forgetful. I know none of this is his fault and he can’t help it. He’s worried as he now notices how hard it is for him to remember anything or even carry on a conversation. But I feel like I’m making huge strides in having compassionate conversations with him.
These are some of the techniques I have learned and some examples.
Don’t argue. If Bob says he played professional football for the Raiders and the Chargers, I just go along with it. I say that I bet it was fun and I hope they won lots of games!
Don’t try to reason. If Bob says that he was in the Marines for 20 years and the Police Department for 50 ½ years, I don’t try to tell him the actual years and try to reason that what he is saying is an impossibility. Especially if you fit in all the college ball and pro football he played! I just say how happy I am that he liked his careers.
Don’t confront. If Bob tells a story about meeting my dad in WWI and saving his life, I just roll with it. I want to scream when he tells me this story and calls my dad Joe (which is his dad’s name) but I just smile and say, “how interesting” or “thanks for saving his life”.
What I do instead is to try to distract him with a different activity. When he tells me that there are wild animals on our street, I respond with “Do you want some ice cream”. That usually get him away from staring out the front window at the wild beasts.
Often, I will have to just leave the room to avoid any confrontation. That’s my technique when he’s telling me how to set up the Mr. Coffee for the 10th time in just a short time period.
I try to remain cheerful and smile at the stories. It must be pure craziness going on his head to pull together some of the tall tales he tells. I might as well grin and bear it. Who else has a husband that knows everyone he meets on the street or passes in the store? Bob thinks everyone is a past football teammate, fellow cop, or high school buddy. Even if they are in their 20’s, he greets them and tells them that he hasn’t seen them since college and it’s so good to see them again. How can I not smile and enjoy this friendly guy? (as long as he doesn’t try to get close and shake hands with them!)
The best technique is to respond to the feeling instead of his words. This is a whole new technique for me, but it works well at times. If Bob tells me that his dad and mom (both long deceased) are coming here for dinner, I don’t challenge that idea but switch the conversation by saying “I bet you really miss your parents”, “I wish I had met your mom”, or “I remember your dad was super friendly”. The goal is to redirect and discuss the emotions and not the words. It doesn’t work 100% of the time but it really can help.
His reality is so different than mine and I can’t control it. I can only control how I react to him. I’m working on being patient, reassuring, and agreeable. I have even been known to accept the blame for something even if I am not wrong. That’s new for me!
I’m finding that Bob is more agitated and frightened these days. He wants to be reassured that I am right with him and that he can go with me. We are attached at the hip!
I often stay up and watch TV or movies after Bob goes to bed. Last night he really wanted me to come to bed when he did, so I went ahead and joined him in bed. He was so pleased. He gave me a lesson on how he folds the blankets, and which pillows he likes just like it was the first time I’ve shared his bed. I just rolled along with this lesson—even as he showed me the TV remote control and explained what it was for. I start my Prime Video Movie (A Night in Miami is very worthwhile viewing) and we settled in.
What happened next is one of those things that just comes out of nowhere. There is no way to be prepared for the roller coaster of emotions of living with a husband with dementia.
Bob: Do you have plans for breakfast?
Me: No, we can talk about it in the morning.
Bob: Well, I have $104.00 in my wallet that I’ve had since I worked for the police. Can you call YOUR WIFE and I’ll call MY WIFE and we can see if they want to meet us for breakfast?
Me: (silent gulp) quiet response—Yes, that sounds good.
So, who did he think I was? What was going on in his head? Who did he think was sleeping beside him in his bed? Had he been confused all evening and was that why he was explaining blankets and the remote? Is there a time coming soon that he will not know who I am?
Well, I’ll never know. I tossed and turned a ton thinking about how “interesting” our lives have become and how going with the flow is going to need to become my permanent style. Bob seemed to have slept like a baby and he woke this morning with no plans for breakfast.
So, the final thing I must learn is to NOT TAKE ANYTHING BOB SAYS OR DOES PERSONALLY. I’ve been reminded over and over that once someone is diagnosed with Dementia that they are excused 100% of the time.
So, I wonder who will be sleeping with Bob with 1 o tonight.