Tinsley is the easy-going man with a warm personality during the day. He smiles often and laughs with me and his guests. He is happy to see us. During the day he engages with other residents in community activities. He likes sing-alongs, trivia games, or watching Hallmark Christmas movies. He doesn’t express anger or resentment toward me anymore. It is a joy to spend time with him when he is the sweet man we’ve all known. But when night comes, he faces his biggest challenge. He can’t sleep and becomes a man I don’t know.
When the sun sets, the sundown syndrome kicks in. He becomes more agitated, irritable, and impulsive. When he starts to feel unsettled, he becomes a difficult resident. He starts to pace the facility. Sometimes he stays in his wing, and sometimes he wanders down other wings. And he doesn’t just wander through hallways. He has a strong tendency to open doors and walk into other people’s rooms without notice. This has happened at 2AM in the morning, and he’ll start rummaging through their drawers or closets. When staff tries to redirect him out of a room that’s not his, he resists. There are some nights that they have to lock the doors of residents to keep Tinsley out.
Several weeks ago during the evening shift, he barged into the nurse’s station. He grabbed some pill bottles sitting on a counter and started to run with them. He announced that the pills were his and resisted two nurses who caught him and pried the pills out of his hands. Two weeks ago, he noticed a staff person assisting another resident who didn’t want her help. Tinsley heard the resident express displeasure, so he grabbed the staff person and pinned her to the bathroom wall. He thought she was hurting the resident. She screamed for help so that other nursing staff could remove Tinsley.
There is nothing normal about these behaviors. It makes me sad that he can’t help it. Since his admission, the medical staff has adjusted his medication three times over the last three months to help him sleep at night. They added Melatonin to his medication line-up and added Ativan on an “as needed” basis. I see him mostly in the evenings because of my work schedule, so I see his personality change after he gets his last round of medications. Last Sunday evening, I came over to watch Sunday Night Football with him. He was enjoying my company while holding hands. The nurse gave him medicines at 9PM, and as the evening progressed, I could see a distinct change in his personality emerging. It was like a switch turned on. His agitation became evident. He announced that he “needed to go.” He got up and started walking through the hallways while I followed. As soon as he reached for a door handle that was not his room, I’d have to tell him “we can’t go in there because this isn’t your room.” Yet he’d still reach for the handle and try to enter the room.
He didn’t appreciate my redirection. He had not slept for three nights in a row, so his tiredness was starting to show in his gait. When he walked, he started to stagger as if he was drunk. So a nurse and I each took a hand of his and guided him to his room. As soon as we reached the doorway, he refused to enter. We tried to gently pull him in, but he wouldn’t budge. So the nurse decided to let go of his hand and deal with him later. But Tinsley chose to grab my free hand, and then he tried to pull me down to the floor. When that didn’t work, he attempted to swing me around in the hallway. He was getting physically aggressive with me, and I finally said, “Tinsley, we’re only trying to HELP you. You’ve been without sleep, and we think if you’ll lie down, your body will rest.” That was too logical! You can’t reason with someone who has Alzheimer’s. He did NOT want to stay in his room.
The latest physician visit occurred on December 18th, which seemed like an eternity since the last visit on November 20th. Before the doctor evaluated Tinsley, I shared my concerns with her over the phone. It’s been four months, and we still can’t seem to help him sleep. He only sleeps when his body finally crashes, or when staff administers Ativan to knock him out. It appears that his medication regimen isn’t working. She spent an hour with him that afternoon and then called me to give her report.
First, she noticed that his weight dropped off again. He lost fourteen pounds in four weeks, which concerns her. The staff believes this is happening because he can’t sit still long enough to finish the meal in front of him. He’ll get up and leave for no apparent reason and then maybe revisit his plate later. Though this is plausible, the doctor is still concerned, so she ordered weekly weigh-ins to monitor this.
Second, she shared a different approach to deal with the lack of impulse control that is causing so much havoc during the evening hours. She is not a fan of anti-psychotic medications to address anxiety and lack of impulse control. She ordered a new drug, Depakote, which also works well with controlling anxiety and managing impulses.
Third, she changed the time when the staff gives him Melatonin. She wants to stagger his evening meds instead of giving it to him all at once.
Finally, she helped me understand that Tinsley is not in the “moderate” stages of Alzheimer’s. She said he’s in the severe stage of Alzheimer’s. When I asked why she thought that, she said, “The biggest indicator is the loss of language skills. We often see this in the severe stages of this disease.”
I share this update with you because I need you to keep praying for him. I know many of you are already doing that, but I wanted you to have a clearer picture of what is happening, especially during the nighttime hours. I invite you to join me and pray in agreement for the following:
- That the Lord will grant him a sweet sleep every night. (Proverbs 3:24)
- That the Lord will restore the joy of his salvation in this new chapter of life. (Psalm 16:8-11)
- That the Lord will give the physicians “generous portions of wisdom” in managing his medications. (James 1:5)
- That the Lord will remove all anxiety in Tinsley as far as the east is from the west and fill him with the peace that surpasses all human understanding. (Phil 4:6-8)
May you have a very Merry CHRISTmas!
Blessings,
Lee Ann
I am a PGA member and I have known Tinsley for many years. He and his father were always shining examples of people who didn’t know how not to be kind. Over my career I have met a good number of golf professionals who shaped me and Tinsley was one of them. I am so sorry about his illness. I will pray for him and his family.
Thank you so much for your kind words, David. Papa Harvey and Tinsley are two very special people. Kindness is certainly one of their attributes. I also appreciate your willingness to pray for him.
Blessings,
Lee Ann
Maybe Tinsley has the same problem with Melatonin as I have. It has the reversal affect on me. Awake all night. I will keep you & Tinsley in my prayers. It is not easy to see someone we love with this illness.
Have a Merry Christmas. Jesus is the reason for the season.
Thank you, Carolyn. I’m sure tbey are monitoring the Melatonin along with the whole line up. Thanks for praying!
Blessings,
Lee Ann
Dear Lee Ann,
This truly is a challenging time for all involved. My heart is sad hearing of Tinsley’s condition. While I pray for him I also pray for you. As you know there are many translations to the Bible. It’s fun at times to see how verses are often translated. I’d like to share the Living Bible translation with you of Philipians 4:6-7
“6 Don’t worry about anything; instead, pray about everything; tell God your needs, and don’t forget to thank him for his answers. 7 If you do this, you will experience God’s peace, which is far more wonderful than the human mind can understand. His peace will keep your thoughts and your hearts quiet and at rest as you trust in Christ Jesus.”
Merry Christmas and Blessings to you Lee Ann!
Agape – John Gonzalez
Thank you for sharing that. I, too, enjoy reading Scripture in different translations.
Blessings,
Lee Ann
Dear Lee Ann,
I’m so sorry you are having to go through this “long goodbye”. I will pray for you and Tinsley. I hope your work is going well. I’m settled into my home in Lawrence and live my old church that I attended 15 years ago before moving to Austin, Grace Evangelical Presbyterian. One of my new Bible study friends has just been diagnosed with Alzheimer’s. Her husband and family are just beginning the journey you are now taking. To complete the journey and be home with our Lord is what gives hope to us. Blessings. Linda
Dear Linda,
Thank you for your wonderful words of encouragement. I love the reminder that our ultimate goal is to be united with Christ and our loved ones. Thank you so much for praying, and I am so glad to hear that you’re settling in well in Lawrence.
Blessings,
Lee Ann
Thanks for your loving candor. Please be assured of our prayers and on going concern.
Thank you, Jonathan. You are one of my faithful prayer warriors.
Blessings,
Lee Ann
Dearest Friend, I am so sorry to see you go through this with him. I know this transition breaks your tender loving heart. Of course I’m sad for Tinsley also. This has to be very scary for him as well.
I will pray for him in agreement with you but will also pray for you.
May God grant us these prayers and give you peace too! May you find comfort in this difficult holiday seaso.
Love and blessings
Ro
Thank you, Ro. You are so right that this has to be scary for Tinsley. This new doctor said she had a “life-changing” experience when she went through a “Virtual Dementia Program.” This program allowed you to wear special goggles (like what you see on TV) to experience the inner world of someone struggling with dementia. She looks at this population of people with great compassion and some better understanding of what they deal with. I asked her if this program was available to people like me, and she is going to find out.
In the meantime, THANK YOU so much for being one of my prayer warriors and for being such a great friend. I hope you have a very Merry Christmas!
Love and Hugs,
Lee Ann
This just made me sob. We went through similar scenarios. It’s so hard for everyone involved. I’m praying for Tinsley certainly, but also for you. Love and merry Christmas
Thank you for continuing to pray for both Tinsley and me, Dana. I know you “know” what I’m experiencing. There is nothing easy about watching a loved one struggle to feel normal and get a good night’s rest.
I hope you have a very Merry Christmas as well!
Love and hugs,
Lee Ann
You are so brave to share your story. I am in awe of the love and devotion you show this beautiful man.
My prayers will be for both of you.
Thank you, sweet Michelle. I deeply appreciate your kind words and for your prayers!
Love,
Lee Ann
Thank you so much for sharing Tinsley’s journey as he is always in our thoughts and you both continue to be in our prayers.
Sending hugs and best wishes for a Merry Xmas!
Thank you so much, Patsy! I wish you a very Merry Christmas as well!
Blessings,
Lee Ann
Larry and I are saddened beyond words of what is happening to Tinsley and subsequently to you. You both have been in our thoughts this week since it is the first anniversary week we have spent in years without sharing it with you, Tinsley and Betty Ann. We treasure those memories. Know you both are in our thoughts and prayers. We hope you find some peace in this wonderful holiday season. Know you are loved by many.
Thank you so much for your kind and encouraging thoughts. I, too, am sad that today we would normally celebrate Mother and Tinsley’s anniversary with you over the years. It would have been 44 years of marriage today. Thank you for praying, and may you have a wonderful Christmas holiday with your family and friends.
Blessings,
Lee Ann
I join you in all those prayers for Tinsley. He deserves God’s peace always, but especially I pray for it to descend in abundance at night. Somewhere scripture says God gives his beloved sleep. Let it be so Lord.
Tinsley is blessed to have you in his life. I’m sorry this chapter is so stressful, but also glad you have a few more moments of holding hands. I would love more frequent updates on how Tinsley’s doing. Sounds like you have a good doctor. Take care of yourself. We need to pray for your strength, discernment, and love to abound too. peggy
Thank you, Peggy. My schedule gets quite full, and by the time I visit Tinsley in the evenings after work and supper, I’m shot when it comes to putting a blog together! I have been way behind for sure. The Scripture passage I referenced in Proverbs 3:24 for some reason does not pop up when you roll your mouse over the verse itself in my blog. It’s the Proverbs passage I think you’re thinking of. Thank you so much for your prayers. We are always in need of them!
Blessings,
Lee Ann
Sounds like a medication problem. Would bring in another doctor (MD) that specializes with this type patient and be sure he is in a good Nursing Home with documented good care reports. More expensive but I would be glad to help! Try a 5mg Valium and see if that works.
Uncle Dudley
Hi, Uncle Dudley:
I specifically requested a psychiatric consult to get a different angle to Tinsley’s situation, and she is the one who started him on a new regimen with Depakote instead of Seroquel. He rec’d his first round of meds on Wednesday of this week, and he SLEPT THE FULL NIGHT Wednesday night! I am hoping that her strategy and philosophy of how you help this population, which is her specialty, is the better way. I have hope!
Love,
Lee Ann
Sounds good!! I thought nothing was working but sounds like you did!! Yea!! Uncle Dudley
You’re right. It hasn’t been working from Aug 20th – Dec 19th! That’s why I asked for a psychiatric consult from one who specializes in the geriatric arena. As you can imagine, she sees a lot of patients with all versions of dementia. Tinsley had his first day of meds using a new roadmap by the new physician on Wed, Dec 20th. Since I see him in the evenings after work/supper, I didn’t learn that he had a full night’s sleep until after I published the blog. But it’s only one night of a full night’s sleep. I will go over there this evening and find out how Thursday night went! I’ll keep you posted.
I hope you have a wonderful Christmas!
Love,
Lee Ann
Hugs and prayers! Sorry this is what you are going through now. I know how difficult it is. Know it IS just one more phase of the disease. Praying with you for his comfort and SLEEP and wisdom for the doctors and staff as well as lifting you up for encouragement.
Thank you, Shari. I have been on an exponential learning curve on how this disease can manifest itself as it progresses. Thank you for being willing to pray in agreement with me!
I hope you have a very Merry Christmas!
Blessings,
Lee Ann
I am praying for all the things you listed and more. I tell all my students what a sweet and kind man Tinsley is. We miss having him come out to visit with us. Wishing you both a happy and peaceful new year.
Thank you so much, Jim! Tinsley is truly one of the sweetest, kindest human beings I’ve ever known.
Blessings,
Lee Ann
Lee Ann, I will continue my prayers for him, its tough for all, Evelyn
Thank you, Evelyn. It most certainly is and it’s very hard to watch.
Blessings,
Lee Ann