8,765.82 Hours of Widowhood

I just passed into another stage of widowhood. I’m no longer a NEW widow. Bob has been gone just over a year now. I will no longer be experiencing birthdays, holidays, and special occasions for the FIRST time without Bob.

It’s now the second Thanksgiving season without him and the hurt has lessened a bit. Is the hurt less or am I coping with it better? Is the pain going away or am I becoming immune to the sting? Is the sorrow lessening or am I a stronger person now? I have no idea. I just know that I can smile more, feel more pleasure, and face these milestones without caving in completely. The percentage of happy moments to sad moments is shifting. Happiness and joy are winning!

I receive emails daily from Grief Share Support Group. Some are meaningful, some aren’t. Some just speak straight to my heart. Here’s the zinger that I pulled from a recent email.

“That is why you must train yourself in biblical hope where you are absolutely convinced that God is and that He has a world to come for you and that on the other side everything will be okay. That certainty has to be bigger than the certainty of your sorrows.“

One of the consistent testimonies in Scripture is that faith can grow strong during the darkest times of adversity. It is during those darkest moments that I have come to know personally that my Lord is the God of hope.

What does this mean to me? My sorrows are certain. They aren’t totally going away anytime soon. Or ever. I miss my husband and the life we had together so very much. I miss sharing my life with him. I miss his touch and kiss (sorry grandkids if that’s gross!). I miss the things that we never got to do that I had thought we would. I miss reminiscing about our trips and adventures together. I miss his silly stories and jokes. Yes, my sorrows are certain.

But on the flip side, my God tells me that on the other side everything will be ok. I cling to that certainty as it is a bigger certainty than my sorrow.

How reassuring. No wonder I can smile.

“Praise be to the God and Father of our Lord Jesus Christ! In his great mercy he has given us new birth into a living hope through the resurrection of Jesus Christ from the dead, and into an inheritance that can never perish, spoil or fade-kept in heaven for you” (1 Peter 1:3-4).

Facebook Official

My goodness. Bob has been on my mind 24/7 this month. And it’s not a bad thing. I think it’s because a year ago right now, things were rough. Bob had declined to where he needed help with almost everything. He couldn’t hold his spoon to eat or hold his coffee cup without dropping it. He had a terrible time getting into bed and just couldn’t figure that out. He would just plop himself into bed and where he landed is where he would sleep. Even if most of his body was hanging off the bed. Once super fastidious, Bob had forgotten how to shave and taking a shower was a very difficult process that he (and I both) dreaded. He was confused over what Fixodent was for and there were times he tried to brush his teeth with his razor. It was so sad to watch the physical decline that most people don’t know is associated with Dementia. Yep, the brain just stops being able to tell the body what to do. The body just stops being able to function without the brain directing it.

Bob was on a downhill slide, and it was excruciating to watch. Thinking back to last October/November brings me chills. But it also is a reminder that Bob was not living a life that he would have wanted. Yes, it was time for him to pass and sometimes these memories of the rough times make me realize that I didn’t lose a healthy happy Bob, I lost the Bob that was ready to go. Weird as this may sound, that helps a bit. I know how Bob wanted to live and how he was living last October/November was NOT how he would have ever wanted to live. On that issue, I am 100% clear.

But this year, I still have lots of changes to process. I am still not used to my new life without Bob. I’m not miserable. I’m just still trying to sort through my feelings about everything! I can be positive and upbeat and then downtrodden and miserable in the same hour. I can cry at the drop of a hat over a tiny thing or be perfectly content and smile during the most emotional experiences. Yes, I’m a mixed-up mess.

I’ve read many books about grief— about 5 stages, 10 stages, etc., but I just don’t think that those books cover everything. They barely scratch the surface. Just when I think I’ve worked through most stages, I come across another hurdle or issue. Maybe I’ll write my own book! Maybe my book would have 50 stages of grief or more!

So today I take another big step in this grief process that isn’t in any of the books I’ve read. Today I change my Facebook status to widow. Yep, it’s finally Facebook official. I know it sounds silly, but my stomach is churning a bit. Dare to move ahead. Here I go.

Bob with me and with his daughters Shelly & Julie
Fall 2021

The Aftermath #2: NEW YEAR. NEW WORD.

For the past two years, I have selected a word (or did a word select me?) to focus on throughout the year while dealing with the challenges of caregiving. Last year my word was JOY and the year prior, my word was GENTLE. I have enjoyed going back and reading my blogs as to why those words became my words. My blog surely helps me to remember where I was mentally at that time. So that’s why I’m writing again today. I’ll need to look back and remember this day.

KINDNESS. This word is my new word for 2022.

The kindness of others has carried me through the months of Bob’s decline and then his passing. It’s true that a rough time brings out the best in people. I’ve been surrounded by kindness. It’s amazing how much love has been heaped upon me. Special family times. Flowers in abundance. Sympathy cards with beautiful sentiments. Long letters. Sweet Facebook posts. Phone calls. Emails. Texts. Handholding. Prayers. Delicious homemade meals. Crying with others. Laughing with others. Heartfelt small gifts. Unexpected big gifts. Special Christmas ornaments. Sage advice. Listening ears. Meals with supportive friends. Invites to go places. Caring hugs. KINDNESS over and over.

So, what I’ve noticed about myself is that I’m much more sympathetic towards others now. I don’t think I understood how devasting it can be to lose a loved one until now. I never felt such deep heartache until Bob’s death. I know I was very sad when I lost my grandparents, parents, aunts, uncles, in-laws, other relatives, and even friends but I don’t think I was as empathic to the surviving spouse or family as I would be now. I needed to feel the pain myself to be able to feel it for others. And boy, do I feel it now. Bob’s death brought feelings I never knew. The pain and sadness that someone else is feeling is so real to me now. I’m sorry that it took Bob’s death for me to feel this deep of a compassion for someone else’s loss. The loss of my husband has changed me in many ways, and I think this is one of the better changes. Yes, my emotions are so raw right now, but I feel my heart is more open to the feelings of others. It’s like I’m set on super sensitive mode!

So, I need to remember to be kind to those that are hurting. And I think you’d agree that we all fit that category. We all have something going on in our lives that is hurting us. We all have some kind of struggle. We all could use kindness. I’m grateful to all of you that showered me with kindness and paved the way for me to choose my new word (and my new action) for 2022!

Here we go 2022!

Be Kind. Please.

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!

“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.

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.