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Several of you have asked me about Mona recently so I thought I’d provide an update.

I think I’ve shared with you that Mona had been moved to a private room next to an outside door in the nursing home so that I could be able to see her without having to spend time in the front reception area or the hallways. This was done at the end of April and I was thrilled because I hadn’t seen her the previous seven weeks due to the shutdown.

 

They made these accommodations for me, frankly, because her condition had slipped to where it looked like she had only a few weeks remaining and they wanted our family to be able to be with her at the end.

 

Mona’s pattern through all of this has been short periods of steep decline followed by plateaus that extend 12-24 months where her condition changes very little. Several times her doctors have believed her condition indicated her passing was imminent. For example, three years ago this month her doctor told me he thought she had only a few months remaining and recommended I begin planning accordingly.

 

And that’s where we are now. During a recent care plan meeting (these are held quarterly where I meet with the nursing supervisor, dietitian, social worker, etc.) I was asked if Mona could be moved back with the regular nursing home population. That way the family of another resident could have that private room and be with their loved one at the end.

 

What they were really telling me is, four months ago they didn’t think Mona would still be with us now. I said of course, please move her back so other families could use that private room.

 

She has lost all bodily functions except the ability to sleep and swallow, and she sleeps 20+ hours per day. Occasionally she moves her arms slightly but that’s about it. It’s been several years since she could speak and the times I think she may recognize me are rare. Open visiting hours are naturally restricted during this time but I’m still able to see her 2-3 times per week, by appointment, outside, in the shade, from a distance of six feet, wearing a mask and gloves, unable to hold her hand or kiss her goodbye. 

 

Strange times we live in.

 

Her vital signs remain strong, as do her heart and lungs and she continues to eat fairly well. Her doctor told me it’s more likely that she’ll pass after she stops eating and drinking for 10-14 days than it is for her to pass suddenly in the night - adding that the human body can sustain on only a few meals per week and she’s still at that stage. So, she may have a few weeks remaining or she could have several more years. There’s just no way to know.

 

As for me, I’m doing okay. This has been a very long road. She was diagnosed almost 14 years ago and she’s been in a nursing home 5 1/2 years. Who could ever have predicted this? But still, I do enjoy my visits with her, as awkward as they are, and I still love her very much. The picture I’m attaching below was taken during one of my recent visits.

 

So that’s the latest. Prayers are always appreciated. 

 

(Originally posted on Facebook August 16, 2020)

Sweet Dreams

I’m home now after seeing Mona at the nursing home. As I was leaving the nurse told me the last few nights Mona has been singing in her sleep. I admit it messed me up a bit. I sat in my car several minutes before I could drive home.

(I just realized many of you may not know Mona had an amazing soprano singing voice. Her friends from high school and college remember. Also, she taught vocal music privately and at our church school for many years.)

It’s nice to have some lovely news after so much recent sadness and heartache in the world. I thought I’d share. I know Mona sends her love to you all.

She was asleep almost the entire time I was with her today.

Happy Cinco de Mona

It's Mona's birthday today. May 5th. Or, as we lovingly refer to it in our family, Cinco de Mona.

Have I ever told you how we met?

I'd spent the summer of 1972 touring Asia with a singing group. I loved singing for the director of that group so I moved to Whittier, CA, to attend the college where he taught. A buddy of mine and I shared an apartment and I started classes that fall. I remember the first day in the choir room. The buzz was all about this girl Mona. "Is Mona going to be back this year?" and "Has anyone heard from Mona?" and "I hope Mona comes back." I remember thinking, who is this Mona girl? I'd never known anyone named Mona.

On the second day of class she walked into the choir room; I still remember it. She was wearing a yellow dress and from the way everyone rushed to greet her it was pretty obvious she was the Queen Bee. (Is there a law against a pretty redhead girl in a yellow dress? If there isn't, there should be.) I certainly noticed her sitting in the soprano section but we didn't actually meet until the next week when I walked into class and she was surrounded by a group of girls who were all excited. Mona was showing them her engagement ring.

That's right. When Mona and I first met she was engaged to be married.

I remember over the next few months we became casual friends. She began calling me on the phone, asking me about a particular choir matter, alerting me to a change in rehearsal times. Our conversations gradually became longer and more personal and we were becoming better friends. Then, one day in November I walked into class and again saw her surrounded by a group of girls. This time they were consoling her. She'd given the engagement ring back to her fiancé.

I was always certain the girl I was going to marry would be tall and blonde, graceful and athletic, someone who loved sports. She and I were going to raise a family of Olympic athletes. Mona was a redhead and on her tallest day she was maybe 5'2". She loved classical music and opera, didn't know a free throw from a goal post, and well, she was a klutz. But she was making excellent money working full time as a grocery clerk, she had her own apartment and her own car and was completely independent. She smoked Salem cigarettes and drank gin and tonic. I'd never known anyone like her.

I admit I was pretty slow on the uptake. I just never thought that someone so worldly, so sophisticated would be interested in me. She's a year older than I am but at that time I was sure she had to be 24 or 25. But she kept giving me these - signs. It took me awhile before I finally asked her out but subconsciously at least, I knew she was someone special. About two months before our first date she came to my apartment to drop off some choir music. She only stayed a few minutes but when she shut the door and left I turned to my buddy and said, "Someday I'm going to marry that girl." Our first date was on May 1st, my 20th birthday. I think about that a lot - the last time I was with someone else I was a teenager.

I remember the choir tour we took at the end of the school year. We performed in Las Vegas and at the Grand Canyon. One night after dinner she and I went for a walk along a trail around the rim of the Grand Canyon and we sat on a rock and watched the sunset. And I kissed her for the first time.

We dated for the next sixteen months, got engaged over Labor Day weekend in 1974, and were married February 1, 1975.

Now you know how we met.

Happy Cinco de Mona, everyone.

And Happy Birthday, Sweetheart. Thank you for all the lovely memories.

Dreaming of Home

I had a dream about Mona last night. I dreamed the nursing home called me and said they'd done some more tests and were able to determine that Mona wasn't getting enough sleep. So, they'd been working with her the past few nights and she was sleeping so much better that in another two or three days she'd be completely healed and could come home. That's how the dream ended.

It's not the first time I've had a dream like that. Several months ago I dreamed I was sitting in a chair in our front room when Mona walked in, again, completely healed. I was so happy I ran over to her and fell to my knees in front of her. I put my arms around her waist and placed the side of my face against her stomach. I was sobbing and I kept saying, "Mona, you're home. You're well. I can't believe it. Mona, you're home, you're home."

In the dream my first thought was to tell my daughters; I had to call them all immediately. But I thought they'd never believe it was true so I decided I'd get my phone and Face Time with them. I'd hold up my phone and show them, prove to them their mom was healed. I got up from my knees and ran to the table to get my phone but when I turned around Mona had a peculiar look on her face. Then she got very dizzy and lost consciousness and collapsed into a chair. The dream ended and I woke up.

There is some truth to these dreams. The concept of home plays a major role in both. In the first dream she actually is at home. In last night's dream she'll be home in two or three days.

I take great comfort in that. In knowing she'll be home soon. I'm not sure when soon is but I know where her home is. She told me more than five years ago that she was tired of fighting this, that she wanted to go home. I told her we used to live in Missouri but now our home is in Wyoming. "That's not what I mean," she said. "I want to go home with Jesus."

One of my favorite hymns is "Great Is Thy Faithfulness"

Pardon for sin and a peace that endureth,
Thine own dear presence to cheer and to guide;
Strength for today and bright hope for tomorrow,
Blessings all mine with ten thousand beside

Great is Thy faithfulness! Great is Thy faithfulness!
Morning by morning new mercies I see;
All I have needed Thy hand hath provided;
Great is Thy faithfulness, Lord, unto me.

In my dreams, Mona may be home only briefly. Jesus is calling her to a home that's eternal.

Power in Gratitude

I was driving home last month after attending one of the Wyoming Dementia Care support groups I attend and I wasn't feeling well. It wasn't anything physical; I just didn't like what I'd done that day when it was "my turn" to participate. There's never any pressure at these groups. Those of us who attend, who care for loved ones with various types of dementia, can discuss whatever we like and the others in the group are always supportive. (Those who want to attend and just observe are also welcomed openly.) But this time was different. This time I took all my frustration, fatigue, anger and sorrow and -- as if they were in a big plastic garbage sack -- dumped them all out on the table in front of everyone.

And that's okay. That's what these support groups are for. We caregivers speak a language few others can understand and these times together allow us to vent and let it all out without being judged. But that's not what was bothering me as I drove home that day. I decided that for me personally it was a time to begin a change in the way I think about caring for my wife Mona, who was diagnosed eleven years ago with early onset Alzheimer's and is now in the final stages of the illness. (She's been a resident of Life Care Center in Casper for the past three years.)

I decided it was time for me to begin counting the things I was grateful for. I'm grateful we have a wonderful marriage. I'm grateful that she's safe and she's receiving excellent care from the Life Care Center staff, who love her dearly. I'm grateful she's only a few miles from where I live and that I can see her whenever I want. I'm grateful she's not in any pain and she's never fearful. By the time I'd driven home that day there were at least a dozen things I was grateful for and I look to add to that list every day.

Funny thing, I've found there's power in gratitude. It's easy to feel powerless while caring for someone with dementia. There have been months -- years, even -- when I felt my life was in free fall, that I had no control over any part of it. Gratitude allows me to define how I look at her illness and how it affects my everyday life. Gratitude highlights and gives strength to all our good memories together and it allows me to look at my future with hope. Gratitude gives me a measure of control, of power. And that's a good thing.

It wasn't always this way for me. If you're caring for someone with dementia and your life is still in that free fall stage, that's okay. During the last several years I've learned that this is never easy -- but it does get better.

No matter where you are on your caregiver journey I hope you'll visit us at one of our Wyoming Dementia Care support groups. You'll meet some amazing people and you'll discover there are ways to regain a measure of power. For me, that began with gratitude.

(This article was written for the Summer, 2018 Wyoming Dementia Care newsletter. For information contact wyodementia@casperseniorcenter.com)

Mother and Child Reunion

My daughter Ruth Pingel is heading home with her family tomorrow. She had one more visit with her mom today. I got this pic of the two of them while Mona was napping. ❤️ 
 

Our friend Dorothea Shipman said she looks at this photo and can imagine Mona watching over Ruth when she was a baby. Here it is.

(originally posted on Facebook on 7/24/18)

The Bowls Are Too Small

Did y’all realize today is National Vanilla Ice Cream Day? Reminds me of the time a few weeks before Mona went into Life Care Center when she went to get herself a dish of vanilla ice cream and then called to me from the kitchen to complain that all our bowls were too small. That didn’t sound right to me so I walked into the kitchen to investigate and found this...

I love that woman so much. 

#NationalVanillaIceCreamDay

(originally posted on Facebook on 7/23/18)