Our son Dan reached out to Doug’s past through social media, asking for short video clips highlighting Doug’s relationships over the years. Friends submitted videos from all walks of his life. Dan condensed them into a single Birthday video for Doug to see, and we gathered as a family and watched it together. We mostly cried and laughed and cried some more. It was beautiful (and mind-boggling) to watch who Doug recognized and how happy he was to see them! He has always loved his people. It was a good day!
More good days has been the mantra we’ve lived by and made decisions by since the inception of dementia. For example, I frequently ask myself or Doug’s doctors, or family and friends, what actions can we take or what choices can we make on Doug’s behalf to result in a good or a better day? Thinking this way assists with my goal to provide Doug with more good days as he lives out the remainder of his life with dementia.
A few years ago, I was introduced to the Positive Approach to Care organization. The founder of the organization is Teepa Snow. Early in Doug’s disease, when researching dementia and its toll on the patient and the caregiver(s), I was overwhelmed by the information’s negativity. There is no cure… They lose this, and they lose that, and they can no longer do this or do that… There are seven stages of loss… They eventually succumb to death by this means or that… It was a lot to take in, especially when I already recognized some of these losses in Doug.
However, my questions differed from the questions mainstream research was seeking to answer. I did not particularly want to know what Doug would lose and not be able to do, I wanted to understand what he could still do and what he would hold onto even as his disease progressed and skills diminished. I wanted to know what part I could play in presenting him with more good days. Teepa Snow and the PAC team, their research, online material development, and positive approach to care have bolstered me along the way and assisted in providing Doug some grace and dignity as he and we lean into more good days.
With that mantra in mind, we said yes to Doug’s left side total hip replacement in September 2020. The surgery went smooth, but the days following proved demanding. The surgery stress, anesthesia, pain medication, and dementia were wearing. As a result, his baseline brain change lowered, and we had a new normal.
Following surgery, there were months of Physical Therapy and a move.
Two months after Doug’s hip replacement, we moved about 1100 miles north to a new state with new doctors and a new PT. Not far into his online Physical Therapy appointments (due to COVID), at our new home, it became evident a right hip replacement may be in Doug’s future. My heart sunk. Maybe, I mused, he inherited a dysfunctional arthritic hip gene from his athletic youth, or maybe from his father’s side of the family.
My resolve to design more good days and avoid another surgery rose in me like a north wind. A second hip surgery frightened me, not because of the procedure itself, but because of the cognitive decline Doug experienced the first time. Doug had a cortisone shot in his right hip, hoping it would provide pain relief. Unfortunately, it did not. Instead, the x-ray showed off severe wear-and-tear arthritis.
Tylenol became the sedative in the short term, but soon, the pain worsened. Doug had a PET and CT scan confirming he is in the advanced stage of dementia. And as time wore on, I began to deeply question which option would provide more good days, limping around in pain or having another hip surgery. There were clear pros and cons to each side of these options. So I went to work to get some firm answers.
There is one clear answer for hip pain and it is the fantastic technology of hip replacement surgery. Doug did not have to be in pain. The surgery would instantly remove it. However, it is not that easy regarding dementia and dementia’s part in adjusting surgery outcomes, patient recovery, and further brain change resulting from the procedure. There is no clear answer. To further complicate the equation, the question regarding what impact pain has on brain change due to dementia and Doug’s inability to clearly express what he feels, knows, and remembers also needed to weigh in.
I talked to everyone who would listen and had an opinion. Stress walked the floor when I should have been in bed. My deep fear was that Doug would no longer recognize me or know where I belonged in his life after surgery. I would be left picking up the pieces of absence, with Doug standing next to me, albeit pain-free.
Grief of this magnitude scared me. I expressed this to my son, and ultimately his response clinched what needed to happen. He asked, “More good days for who, mom, you or dad?” The surgery option won out and went on the calendar.
Tomorrow is the day. Tomorrow morning, Doug checks in for right hip replacement surgery. As Doug’s Power of Attorney, I will sign the forms. As his caregiver, I will ensure the house is in order and ready for his return. As his wife, I will pray and give him a hug, kiss, and reassurance that everything will be okay.
I am taking a deep breath as I write this and trusting God with the outcome and my future. Doug is peaceful and unruffled. I learn from him every day and love him completely each step of the way, one day at a time.
Karen
As it is in Heaven 
Such a thought-filled son you have! I’m so glad you have others to lean on and gather strength and wisdom. Praying for you all tomorrow and you ever after. ❤️
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Praying for you and Dough love ❤️ Leti
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Hey Karen. You are a shinning light on the path of life with your positive example of how to manage the ups and downs of Doug’s dementia. You have remained in touch with his soul. Thank you for sharing your steps and efforts so we too can send love and support to you and learn from your example. love from Barbara Field.
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Karen, thank you for inviting us into your journey and just know you are deeply loved and supported. Continued prayers for you and Doug. (Kim Lawless)
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Karen, I had no idea. You may not remember me; but I remember you both. And, as I have learned…Jesus will never forget us, even if we forget Him! Teepa Snow is long time Goodness with Dementia. Will be praying for you both and the entire family for the good moments to FAR outweigh the not so good ones! Much info on my website also, if you want to look when time allows! Sending PRAYERS!
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You are remarkable! Will be praying for you and Doug in the morning. Love you, Vickie
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Praying for a great outcome. What a tough choice but I think a good one. Supporting you in spirit always. And grateful for what you have shared from your journey. Will be checking out Teepa Snow.
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You are such a brave lady. I just feel Doug knows are helping him. We all miss you so much and pray for your family💗💗
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I was overwhelmed with boxes today. Moved back to NYC after two years of bliss in the desert (remote working due to Covid). Your journey reminds me to be grateful. Hang in there. You are a very bright star. XX
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We are so thankful that Doug’s birthday was wonderful. What a precious gift your son provided. As always, we are glad to hear the updates of this incredibly challenging journey. We’ll be praying for you both as you navigate this next surgery and the days to come. May the Lord bless you with His peace that truly surpasses all our understanding. Love you both~
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I had never heard of the “Positive Approach to Care”. Thank you for sharing! I hope that the surgery goes well and the recovery brings you both more good days.
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Today we pray for Doug’s surgery and plead the blood of Jesus over his brain. May the anesthesia accomplish its intended use and no further damage. With pain gone May Doug experience more clarity. May the Prince of Peace guard your heart and mind In Jesus Name bee love you both!!! We fully intended to make a video but both ended up with the big c. During that time we were unable to make a video. Will do one for his recovery 😊❤️🙏
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Thank you, Karen for that update. We will be praying with you. I, Sandi, am going through some issues with Russ now as he fights to recover from Covid-pneumonia and I can relate to looking at each day with him as a gift. You are an inspiration to me to look for joy in the little things. The medics are not sure at 91 he will pull through, but we are trusting God to know the time and the place and every evening we spend an hour or two alone and it’s worth it just to have that little time. You’re comments remind me how lucky I am to just have conversation with my best friend.
It’s a common surgery, and my prayer is for little trauma and speedy recovery.
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Dearest sister friend from many years ago, Jennifer shared this post with me, and God led me to read it this morning and to intercede on your behalf and Doug’s behalf and on behalf of your family and the friends that He has called and anointed to help you in this season. I pray God‘s anointing of healing over the hands of the surgeon, and I pray the healing blood of Jesus over Doug. I pray God‘s peace which surpasses all understanding and His everlasting love that casts out all fear over you. I love you, dear one.
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Thank you Julie for reaching out and for the beautiful and perfect prayer. It is a gift to connect with you after all these years. The surgery went well and one day into recovery I am so grateful that cognitively Doug is doing well also! It is an absolute answer to prayers. Blessings my friend. Karen
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Hoping the surgery went well without further cognitive loss. Praying for Doug, for you, for all of you. 🙏❤️
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You are the strongest woman I know. I admire you so much.
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Hi Karen,
Your writings and journey with Doug has made a profound impact on me. I pray you’ll publish these into a book someday and realize how much your words, heart, love, transparency and even fears will help others walking the same road with a loved one. Our hearts go out to you and we’ll continue to pray for you and Doug. I’m His mighty love,
Tim and Jean Dolby 🙏🏻❤️
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