Take 1 deep breath and then another…

The holidays bring out both the best and the worst in people, just like weddings and funerals. Throw dementia into the mix and you have a crapshoot.

“Are you mad at me?”

“No.”

“Have I done something to upset you?”

“No.”

“Are you scared? Tired? Hungry? Overwhelmed?”

“No, No, No, and No.”

“Okay, but your body looks unhappy. Do you want to stay home?”

“No.”

He shivers, shakes, stims, stares, and bolts up over the stairs or into the bedroom. So then I guess that he needs quiet, and maybe something to eat. I have no idea.

I cry and he stares at me. He has no idea what to do, so he yells at me to stop. I know in my head that it is the disease. We’ve asked a lot of him, but it doesn’t help my heart.

I put pictures up of the family and I’m told that he looks good. He does. He looks like nothing is broken. He rises to the occasion when we go into public and is wiped by the time we get home. He lays down for a nap and we pray that he will feel better when he wakes. Sometimes he does. Sometimes he just becomes more tired.

We listen to audio books. He likes that. We can listen together and not talk. We watch crime shows together. Same.

The best times of his days are first thing in the morning. We do our separate devotions together on the two ends of the couch. I ask him what he’s learning. He can’t tell me, but he knows that he liked what he read. I tell him about mine. He offers his two cents. He is full of wisdom.

He keeps his mind busy with games on his phone. He can tune people out and concentrate on filling tubes with colors or making words. He rarely reads. He can’t retain the text. However, he still follows a storyline with audiobooks and movies, partially because we can pause it and talk about what is confusing and we are listening together.

He loves music. He especially enjoys the music from the 80’s and 90’s and loves foot stomping worship songs. It is gratifying to see him raise his hands during worship time at church. It is his favorite part of the service.

He still remembers many people. However, he may not recognize them. It sounds like this is a misprint. It is not. We will drive past houses and he will talk about the people that live there, memories from growing up, and stories that bring him joy. However, if he sees those same people in public, even with prompting from me, he has no idea who they are.

He remembers us, but calls us by the wrong names sometimes. However, he knows that we are his people and that we love him. This also means that when he is overstimulated and confused, we are the ones that he is short with. We are safe.

When he is sad, confused, frustrated, angry, and hurt, he comes across as angry and yells. He can’t delineate between emotions. That being said, his kids, grandkids, and I make him the happiest. He’d move heaven and earth for us. His biggest joy is when he repairs or builds something for us. He recently replaced flooring downstairs, took out 2 sliding glass doors and replaced them with windows, created 2 closets form the overhang in the lofts, made a box with our grandson, cupboard doors for the kitchen, and refinished an old child’s desk for me. It blows my mind that there are days he can’t find the right words to complete a sentence, yet he can create a masterpiece in the shop.

We were told that he wouldn’t be here with us at this stage, but he walks, talks, reads, putters, does most of the house chores, and remains very independent. At present, he is putting together a 300 piece puzzle in the loft. It looks like will make our 35th wedding anniversary in May. That is a miracle.

I asked and continue to ask God for more time with good health and mental clarity, and He has been faithful to grant me the desire of my heart. If it means that we have to endure tricky behavior, it is so much better than the alternative.

So as we end this year of 2021, may I focus on what we have and not dwell on the tough stuff. He’s still here and for that I am so very grateful even though dementia is still a jerk.

Dearest Russell,

I dreamed that you died last night. I didn’t know what to do, so I went to school just like I always do. I carried on as if it were a regular day, because I didn’t know what else to do. Once at school, it dawned on me that I needed to contact people and make plans to put you to rest. I thought I should tell someone at school, and once I said it out loud, I cried and cried. I felt as if the life had been sucked out of me. Then I felt guilty. How could I simply carry on, after losing my soul mate? That’s how I awoke. 

I don’t know why I had such an unsettling dream after having such a wonderful day with you yesterday. We enjoyed 12 hours of a local vacation at one of the state’s most beautiful areas. Perhaps I felt guilty that we had such a good day, because you were so clear. Nobody who came in contact with you would have ever guessed that you are nearing the 8th anniversary of your dementia diagnosis.

Today we were reminded to not get distracted by the mess going on all around us. We were challenged to be purposeful about how to live and to react and to remember that God has got this. Is that what I was doing in my subconscious? Did I take my eyes off my Maker, and allow the devil to make me afraid?

We talked on our drive today about Peter taking his eyes of off Jesus, while walking on water. As a result, he began to sink. I don’t want to do that. I want to keep my eyes fixated on Him, loving our Creator with all of my heart, all of my mind, and all of my soul.

I’ve never been alone in my whole life. If someone were to ask my what my greatest fear is, I would say, “being alone”. I went from growing up on a busy dairy farm, to a college dorm, to living with 5 roommates, to getting married, child-rearing, and teaching full time. Why is my greatest fear haunting me while I rest?

I was blessed with sitting with a wise friend for lunch. As I shared a portion of my dream, I was reminded that JOY is a choice. As I listened to the message I was encouraged to LOVE with everything I’ve got. As I took you to your favorite store this afternoon, you encouraged me to seek counsel from LIKE-MINDED people, and during my devotions, I was reminded that WISDOM and UNDERSTANDING was more valuable than silver and gold.

Tears flow a little more frequently these days. I’m not sure why. I try very hard to concentrate on the here and now, and not give way to the devil with fears of my future. I have been so blessed with all you have done to our home to make it comfortable and easy to manage when the time comes that I am alone.

I take the time to use my senses: to smell you, listen to you as you breath when I tiptoe out of the bedroom, to see your smile, and to appreciate the meals that you have prepared when I get home from work. I don’t want to forget one single thing, so I try very hard to live in the moment. I don’t want a single regret in the end.

Things that used to drive me crazy- I don’t give much thought to any more. Yes, I noticed that you bleached yet another towel, I washed another pocketful of screws, and I saw that you created another junk drawer while I wasn’t looking. I also peeked at the pictures of you scaling the walls to swat flies, and then to wash the windows covered with bug splat.

I sucked wind last weekend when you didn’t recognize me when we awoke, but God blessed us once again, when you recovered and called me by name. I was also shaken up last Sunday when you couldn’t recall the day as we shut out the light. Sometimes it is easy to forget that you have dementia and are declining, because you are so active, are still creating and projecting, and you are so fluent with discussing current events.

I want you to know sweetheart, that when you forget who your Maker is, we will remind you. We will continue to play Christian music, share familiar bible stories, invite like-minded friends to join us, choosing JOY and LOVE. May you continue raising your hands in worship, and exhibiting your sincere faith to all who watch you from near and far.

I want you to know that I love you so much, and that although our marriage hit turbulence on several occasions, I have never regretted loving you through it. When God calls you home, I will be okay. It will be merely a “See you later” and not a “Goodbye”, and that will bring us comfort. I will cling to the Lord, our children, family, and friends and I promise you that my love won’t grow cold.

I will love you into eternity.

Love, Cind

Thankful November

It is dark out. Why am I awake? It’s Saturday. I thought about returning to bed, burrowing under the mound of covers that we have on our bed. “The stove is out. Coffee sounds good. I wonder if my favorite cup is clean?” takes over my mind, and I’m now awake. Sipping my favorite warm drink between the ears of my pig cup, I am reminded that it is November.

November. It’s amazing how one proper noun can make ones heart race. For us, it means: “batten down the hatches! On your mark, get set, go!” We moved to the mountain 9 years ago, Thanksgiving weekend. We had no idea what to expect and spent a very cold winter huddled up around the fireplace in our breezy, new to us, home.

 

Nine years later, we have learned how to tighten up the house. Never will we ever be that cold again if we can do anything about it. This leads me to Thankful November.

Sometimes I get so caught up with where I am going, that I forget to look from where I’ve come. I concentrate so hard on not looking at the past and moving forward, that I don’t celebrate the growth and change that took place along the way.

Recently my favorite man and I have been enjoying the “oldies”. He has figured out how to mirror his phone to the TV and we have been watching videos from musicians that we enjoyed when we were much younger. I’ve been saving them to Spotify on my phone so that we can play them in the car on our trips together. To name a few, we have listened to Anne Murray, Randy Travis, George Jones, Brooks & Dunn, George Straight, and his favorite: Reba McEntire. I love how YouTube figures out your interests and continues to put similar items on the screen. It is amazing how music has reactivated lost memories for my husband.

At one point, I looked over and he was wiping tears from his eyes. Concerned, I asked him if he was okay. We were listening to “Healing Waters”, by Michelle Tumes. She has an absolutely gorgeous range, clear, and beautiful. He said it reminded him of his mother and the CD we replayed over and over for her in the hospital during her last days. Although sad that he was teary, I was happy that the song brought his mother back to his mind. She’s been gone for 17 years.

We have also been watching Little House On The Prairie in the evenings. They just don’t make Prime Time TV like they used to. Shows like Hee Haw, The Waltons and Lawrence Welk were clean family friendly shows that displayed healthy value systems. Mostly “happily ever after” with a lesson to be learned, we ended the day feeling thankful and optimistic. More than anything, the series has brought back a flood of memories for my favorite man. As a result of watching Little House, he has talked about Bonanza, and Highway To Heaven. He has googled the history of each of the characters and given me tidbits on the lives of both the actors and original characters for which the Little House books were written.

75369309_10220217798017444_8258874479850029056_nRecently I have told our doctor that my favorite man has an internal motor that will not stop. He is always puttering. He has an internal drive to run our home like a small farm, because that is what he knows. It is so engrained in him to be busy, that he is either doing a project, drafting a project, or finishing up a project at all times. Number 3 of 6 children on a small dairy farm, work was never “done”. You were just done for the day. I truly believe that this is what is keeping him with us and why he is as clear as he is today.

Last fall he worked diligently to prepare a living space for the kids downstairs so that they could be a watchful eye while I returned to school. This spring he built a beautiful deck out front so that we could entertain family and enjoy the gorgeous view from the balcony. This fall, he created an addition to the back of the garage, to house wood pellets and lawn/garden equipment. In between, he filled his days putting the finishing touches on projects, working on the many gardens that he created, and mowing the lawn. He will not quit, and that is what is keeping his mind with us.

He’d really like us to leave him alone. Although he misses people, he’d rather be alone. He likes to know that we are around, looks for us if we are out of sight, but would much rather have us go away. So the challenge is to be around to help and keep a watchful eye at a distance in order to keep him safe, but give him plenty of alone time. (It’s a delicate dance.)

So, as the sky starts to lighten up and my coffee cools, I am thankful. As I look forward, I am reminded that the bills from his building projects will eventually get paid, but I have  limited time with HIM. My days of building projects and multiple trips to Home Depot will one day be a thing of the past just like the music and the old shows. So I need to relax, let him build, take one more trip to Home Depot, and realize that one day these memories will be great comfort. The “Healing Waters” which cause a flood of tears will be walking through the lumber isle of Home Depot, and looking up at the mountain to the 7 1/2 acre “farm” that God gave to my husband in November of 2010.

So on this Thankful November, I thank God for Knowing that my favorite man was going to need more projects than he could keep up with in order to heal a broken heart. The outstanding bill at Home Depot reminds me monthly that he is still with me, doing what he loves, for the person he loves most in this world. Like Pa on the show Little House on the Prairie, he does what he does, for me.

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“Lord, help me not to be so forward thinking, that I forget to look back from where I came. And Lord, thank you for my favorite man: his motor that won’t stop, the Home Depot bill that reminds me that he’s still with us in mind and body, and his intense desire to take care of his family. Thank you for our “farm” that keeps him active, for music that makes him cry, and shows that bring back memories of days gone by. The blessings that you pour over our home are undeserved but appreciated so very much. Amen.”

Philippians 4:11 “…for I have learned that whatever state I am, I will be content.”