Journal entry by Nicole Mills

Douglas T. Mills (Doug) of Lakewood, IL formally of Roscoe, IL died May 26th, 2018. Born June 14th, 1962 to Kathleen and Donald Mills. Married Laura Ahnen Mills in 1988.
Doug was a wonderful man, kind hearted, genuine, faithful, and the life of the party. He wore his many hats proud. A man of God, a business man, friend, son, brother, husband, uncle, cousin, father (to many) and newly a grandfather. He provided for his family by working in the construction industry and later as the business owner of Five Star Concrete Contracting Inc. Besides his family, Doug loved the outdoors. Biking, golfing and swimming were a few of his favorites along side of traveling with family and friends.
He will be forever missed by his loving wife of thirty years Laura (Ahnen) Mills. Children- Nicole (Ryan), Bradley (Kayla), Mitchell and grandson Lincoln. Doug also has a sister Deborah (Mills) Russell along with many brothers-in-law, sisters-in-Laws, nieces and nephews that he loved as well.
A celebration of Doug’s life will be held on June 16th, from 4pm-8pm at Crystal Lake Country Club, 721 Country Club Rd, Crystal Lake, IL 60014. It is an open invitation to all those who were lucky enough to have Doug touch their lives in one way or another!
In lieu of flowers, donations would be appreciated to the Creutzfeldt-Jakob Disease Foundation, Inc.

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Journal entry by Nicole Mills

We have decided to have a celebration of life for Doug on his birthday weekend! Please join us for appetizers and cocktails at the Crystal Lake Country Club, June 16th from 4pm-8pm. It is an open invitation to all those who were lucky enough to have doug touch your lives in one way or another! Please pass on the invitation.

Crystal Lake Country Club: 721 Country Club Rd, Crystal Lake, IL 60014

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Journal entry by Nicole Mills

Doug has gotten his angel wings. The nurse had come in around 12:15 and said it would only be a couple hours and 15 mins later he took his last breath. Brad was there with Mom. So very sad but also so relieved it’s over. They had to wait for 2 more hours for him to be picked up. Because Doug was so passionate about research for disease cures, they decided to donate his body to CJD research. And because, God forbid, there is a small percentage that this could be genetic. We are not sure the timeline when we will receive his ashes back so no plan as of yet as to when there will be a celebration of life. Thank you all for the continued prayers and warm thoughts that were sent our way. We couldn’t have gotten through this terrible time without your support. We love you all❤️!

Journal entry by Nicole Mills

Another restful night for doug. The Nurse today said she sees some Severe changes from yesterday’s breathing & coloring.
She is going to come back in a few hours to recheck. The best way I can describe it is it’s almost as though he is in a coma. The nurse said if he wasn’t as young as he is she’d tell us not to go anywhere today. We are all praying that God gives him his angel wings soon. #DougStrong

Journal entry by Nicole Mills

Everything is status quo with Doug. He had a restful night sleep! Laura was able to sleep next to him last night so it was an emotional night for her. They are keeping him very comfortable and we are just trying to stay strong and be here for him at this time. He has so much love around him. Doug occasionally stirs and it seems like a little seizure but passes quickly, then is back in a deep sleep. The drugs are doing their job! If you didn’t know how sick he was, you’d swear he was taking a nap, or “just resting my eyes” as he would always say! The hospice facility is absolutely beautiful and serene. We have french doors opening up near the end of his bed and a little terrace we can sit out on that over looks a park and forest preserve. Weather has been beautiful the last couple days. Everyone is happy he is here, and we know he would just love this place. It is much less stressful for sure. It’s only a matter of time now, but we won’t be leaving his side! #DougStrong

Journal entry by Nicole Mills

Julie’s updates: 6am

Doug had barely opened his eyes all day yesterday and was starting to have trouble swallowing. Hospice nurse came here at 10:30pm to make adjustments because we were unable to give night meds to help him sleep. She changed dosing of ativan and morphine to replace seroquel. While she was still here, Doug started having a really hard time breathing because of a large amount of phlegm he could not get out, which was very frightening. His breathing began to get really shallow due to the stress. Nurse felt it was best to call for an ambulance and get him to hospice center to suction him out so he could rest more comfortably. At midnight when they were leaving, she felt it could be less than 24 hours. Emotions of disbelief are very high. Brad and Deb went with Laura. Nikki, Ryan, Lincoln, Mitch & I are at house . Kayla flew back to Florida yesterday am to drive back with her mom and Tucker since Doug had seemed stable. They were leaving at 4am this morning and planning on driving straight thru. She’s hoping to make it back in time to be here with everyone.🤞🏻🙏🏻. #DOUGSTRONG


Laura just called- the ambulance ride appears to have broken up some congestion so they didn’t have to suction Doug. He’s on iv port for meds. Woodstock JourneyCare having issues with bldg heat so now they are going to take him to Barrington. Laura’s very happy about not being in Woodstock because of our dad having been there. Laura and kids decided it will be less stressful keeping him there with constant nursing staff. We will Update later in the day once we are settled in Barrington. #DOUGSTRONG

Journal entry by Nicole Mills

Message from Julie: Hi all! The move home yesterday went smoothly. Doug seemed to be pleased to be home. He woke up in the middle of the night with a pretty severe psychosis episode. Took quite some time to calm him down. Tough to go thru. Nurse came in this morning and we decided to start him on a 4 hour regimen of ativan to keep anxiety under control. It's now all about comfort and not having any extreme episodes. Emotions are still running high. Laura said became even more real having him home.☹️ Kids have been amazing and doing anything and everything to pitch in! No talking anymore, still eating and drinking ok. We are Continuing to search for 24 hr live in caregiver. The doctors agreed that it is important to have the help not only because Doug is strong and needs care assistance, but also because the family needs to be able to enjoy and cherish this time with Doug. We have a few caregiver possibilities that can hopefully start ASAP. Taking it one day at a time. #DOUGSTRONG

Journal entry by Nicole Mills

The results are in...sadly it was not the positive outcome we were hoping for. Today my dad was diagnosed with CJD. The doctor has said although every case is different, the average progression of CJD is approximately 4-6 months from the onset of symptoms. Some are longer and some shorter. However he seems to think my dad has progressed pretty quickly and is further along in the disease. When we asked how long we might be talking, he said he thinks “three months would be long”. However...we know dad is strong and he’s a fighter, so as long as he continues eating...he should continue to thrive!

We will be heading back to crystal lake tomorrow, as we have decided to take dad back home with hospice! When we asked him if he wanted to go home, his eyes lit up and he gave a big nod! We know this is how he would want it. We are all so ready to be out of these hospitals, hotels and suitcases...and ready to be back home with dad!

Thank you to everyone for all the thoughts and prayers. They have been felt all around and keep us going! Let’s please keep them coming, as we will have a rough road ahead of us these next few months. We are going to stay strong as a family, because that’s what we do best, and get through this together! Thank you so much, from the bottom of my heart, for all of the help we have received through these last few know who you are...we could not have done this without you!! I also wanna thank everyone for the snacks and gift cards we received to help make sure we were still eating and keeping our strength up as well, it means the world to us!

PS...I will continue to post updates on dad as we take him back home with us and fight this ugly disease along side of him! I feel as though this is the best way to keep everyone on the same page...literally. #DOUGSTRONG

Journal entry by Nicole Mills

Awaiting the results!! We got word from the lab that the results should be in today. Doctors were in this morning to see Doug, but no new information as of right now. They confirmed that the lab said they won’t be sent out before then 3pm, so we are expecting some news by 4pm...the doctors said they’ll be sure to be super annoying and bug the lab about results all day!

Doug continued his first dose of IVIG last night after initial reaction and all was tolerated well with the assistance of an added steroid! He slept great last night and woke up pretty well rested. This was the second night in a row that he did not need Ativan to help him sleep! He was able to say a few words when us kids arrived at the hospital this morning and was moving his left arm more freely! Trying to stay positive that this is a therapeutic result of the IVIG flushing his system. Only time will tell.

A Special thanks to our angel of a nurse, Veronica! She will forever hold a special place in all of our hearts! Doug took a liking to her and she truly was able to calm and relax him when needed. He didn’t want to let go of her hand this morning when she left after her last shift with us. Thank you sweet Veronica for your kindness, compassion and gentle hand! Your smile always brightened our day!

Let’s keep these prayers going...the count down is on...pretty sure this is going to be the longest day for us by far! We love you all, and thank you all for the kind words and prayers! ♥️#DOUGSTRONG

Journal entry by Nicole Mills

After talking with the neurologist, she made a reference to a book that was recently written and is now being made into a movie. The book BRAIN ON FIRE, by Susannah Cahalan is written by a girl who had been diagnosed with encephalitis (which we all know has parallel symptoms to CJD as well). The main character recovered and wrote a book to tell about it. Kayla and I decided to pick up the book, not to try and diagnose dad, but to maybe get alittle insight into what he’s going through! I know everyone handles grief differently, so some of you may not be interested in this. As for me...this is helping! I so badly wish I could be in his head for just a moment to better understand what he is going through. To find a way to help communicate with him or to find something that might make him feel even the slightest bit better. Hopefully this book will bring me the insight I am looking for. Everything we have been reading is verbatim what dad has been going through. They use the term “out of body experience”, and multiple times that was how Dad had told me he was feeling. The medicines she is taking in the book and the treatments she goes through are all to firmiliar to us. So I thought I might share In case anyone wants a different look into what my dad is going through! #DOUGSTRONG

Journal entry by Nicole Mills

How this all began...

Doug had originally been diagnosed with vertigo at the end of March due to dizziness and fogginess symptoms he was having. A couple weeks went on and symptoms were seeming to worsen a bit as well as anxiety setting in from frustration. His general practitioner’s recommendation was to go to their house in Florida, get away from work for a while, and just relax. To basically Rest up and let the vertigo run its course.

Once in Florida the symptoms began to worsen. All of his senses seemed to be heightened. OCD like symptoms kicked in and he began to do things over and over and over again. He would obsess over little things and not realize why he was doing it. Laura and Doug began to relate it to “skips in a record”. They decided to see a therapist whom explained it as severe anxiety from dealing with the symptoms and almost was being portrayed as a mental break down. The therapist told them when episodes like these occurred to just bring up the phrase “it’s just a skip in the record” to ground him again and make him realize he can overcome the episode.

In the last couple days before going into the hospital, we noticed some bigger changes. His sense of touch was heightened, all lights needed to be on and bright in order for him to be if he felt like things were closing in on him. He was also startled by anyone touching him or moving too quickly towards him. His motor skills began to be effected as well. It was almost as though his brain couldn’t tell his body what needed to move and when. He lost his facial expression and wasn’t sure what face to make in what situation. When he did react to emotions they were completely exaggerated or he would laugh just because everyone else was laughing but he had no idea why. He became very wobbly when walking. He began clenching his fist or widening of his fingers and kept them there for long periods of time. It seemed like all of these symptoms just kept getting stronger and the list of them got longer. Thankfully our whole family had been in Florida at this time, and we all decided this was worse than we first thought. We decided it was time to take him to the ER and have a specialist look at him and run some tests. We went in there expecting to find a brain tumor of some sort or possibly a stroke....


The following paragraphs are updates each day of our journey with Doug in the hospital. The first one starts after he had been admitted to NCH in Naples, and continue through the present. This is when we realized just how severe this diagnosis might be. 


5/7/18 Update on Doug per family meeting with doctor: CT scan was done on abdominal yesterday because he has been vomiting and sometimes they said cancers in other areas can send signals to the brain and cause dementia like symptoms. Ct showed spot on liver so he was taken in for an MRI today to see if it could be cancer. looking as though it may be one of two things.


1. CJD (rapid progressing dementia)


2. Liver cancer (can cause very similar symptoms to CJD)


As much as we would never wish cancer on anyone, I can’t believe that we are hoping it’s cancer right now. Cancer would mean he at-least has a fighting chance. The neurologist said that the only two things in this day and age that are worse than cancer are CJD and ALS. Waiting to see what results of MRI show: 


If they see that it’s a tumor, and does not have the specific traits indicating if it is benign or malignant than we will have to have a liver biopsy done tomorrow. 


If they can immediately tell that it is malignant then she will be able to rule out CJD and begin treatment of steroids to keep cancer at bay. That will then be followed by chemo. Steroids treatments and shrinking of tumor will help with the dementia side effects, seizures and all other symptoms that he is dealing with right now. 


If it is benign, then we can pretty much guarantee it is the CJD In which there will be no treatment for and we will discuss further steps at that time. They did send out lumbar puncture labs that take a week to get back...these will indicated if the prion proteins are present which tells us that it is CJD. Generally the prognosis for CJD is 6-8 months. Depending on how far progressed the symptoms are already. 


Both of these disease are something that we need more medical help with. While this hospital he is at right now is a five star, they just don’t have the means of treating him with the best of the best tools. They plan on med-flighting him to Chicago asap..(Wednesday or Thursday) once these couple tests are finished. Rush is the best hospital for CJD. That was our first choice but they are full. Waiting to hear back from University of Chicago and northwestern. If it Is cancer and we can’t get into those Chicago ones there is a Mayo Clinic in Jacksonville that she highly recommends and another hospital in Rochester Minnesota. Praying a Chicago hospital has room!! These next 24 hours will hopefully give us a clearer look at the diagnosis. 


Is he aware of what is going on? Recognizes everyone still and is talking here and there. You generally have to prompt him. He Has moments of sharp clarity! He knows something is going on but doesn't know what. And isn't 100% there so he doesn't really ask, if that makes sense. #DOUGSTRONG



Doctors are waiting for two test to come back to show for sure that it’s CJD and not an autoimmune disease in the brain. Both have similar symptoms. The test that she already sent out for takes 7-10 days to get back so we won’t know until we are already in Chicago. If it were to be an autoimmune, there could be treatment depending on which of the 100’s of autoimmune it is. She said the testing for what kind of autoimmune is tons and tons of labs. And treatment would be tons of poking and prodding and tests and labs and really is that how we want him to spend his time if it’s not ultimately going to fix him in the end. Planning on having a slight take him to Chicago on Thursday we just are waiting to hear back from the last two hospitals. We have all the flight information figured out already. Then we can go from there

MRI was clear so it's a pretty good chance we are looking at CJD. News as of 3 hours ago: we got a bed at university of Chicago! He will be airlifted there tomorrow afternoon or Thursday morning and us kids will follow on commercial flights! #DOUGSTRONG




Message from Laura this morning:

Med flighting this afternoon at 3:15. We are still so hopeful as one of the first signs of CJD is memory and Doug is a rock with memory. Has remembered every nurses name and face every day they are here and return the next day or days later. Dr. randomly said he is hoping we get to Chicago and they find out its seizures that with meds will be controlled. Another ray of hope. Please keep the prayers coming. We will be staying at the Hyatt near university of Chicago campus while we have Doug in that hospital. Love you all and feel your love and prayers. I am so blessed to have all of you in my life.#DOUGSTRONG


5/10/18: air travel day! Both plains arrived into Chicago around 730pm



Here’s alittle update so far...We are safe and sound in Chicago! Dads flight went great! We switched his anti seizure medication to a less sedating one yesterday so he was way more alert. Only one seizure on the whole plane ride so they were really happy with that! The new hospital is great already! Much nicer room and more space. Doctors saw him yesterday and started him on a continuous EEG to monitor brain waves constantly! Went the whole first hour with no seizures on that so that is good! This will really help to get a better picture of what’s going on in there. Waiting on neurological team to come in again this morning and give us there thoughts and a game plan! Mostlikey an MRI today as well. He didn’t get much sleep at all last night with the stressful day and getting into a new place and new people assessing him, so we are waiting till after the neuro team comes in and letting him rest before we head up to the hospital. I will keep you posted as new news arises! Keep the prayers coming please! #DOUGSTRONG


Later in the day update:neuro was in today and Said he has one crucial spinal fluid test he wants to do along with another “conscious” mri before making diagnosis. Doctor was VERY thorough! Very gentle and soft spoken. Whole team of students with went in for the MRI but they don't believe he will do the lumbar puncture until tmrw. So now it's Back to the waiting game. #DOUGSTRONG



This morning update dad ate a bowl of oatmeal with blueberries strawberries and raisins. 1st meal in 3 days. Left arm all of a sudden raised and he was acting like he was conducting the orchestra. He was pointing and moving his fingers. Very encouraging. Neuro resident came in and videoed it to show Dr Xie. He’s wiped out now because it took a lot to eat.! Night was a tad restless but not to bad. Spinal tap today in room. #DOUGSTRONG



Dr. Xie came in. Said no change in EEG. Had it Disconnected. Exam findings similar to two days ago.  Still thinking CJD most like diagnosis. Spinal tomorrow am to rule out any other possibilities. Unfortunately that means the waiting game will be continuing. Hoping to have results in the next couple days from the origional prion test. Dr Mastrianni (CJD specialist) coming Wednesday to consult! Rigid episodes and freezing for minutes at a time happening more often. Struggling quite a bit more today processing questions. But can be present at times. Remaining hopeful! #DOUGSTRONG



Dr and team both here this morning. Still no results back but said there's a possibility we could receive a false positive or negative from original test requested which is why they are doing the second spinal today. The test that they are running is 97 to 100% accurate and they're also going to run the panel for a possible encephalitis diagnosis.They consulted the CJD specialists who decided to start him on a steroid regimen along with seroquil (which can help to prevent steroid psychosis because he has such a high startle/panic reflex) later today after the spinal. That should help reduce inflammation in the brain if it is encephalitis. If after a period of time they see no change that will lead them to believe that this is indeed CJD. She said he'll most likely be here for a couple more weeks. New Spinal results could take as long at 10-14 days to get back but will be much more accurate. She also discussed long term option to start thinking about for either diagnosis. We are still remaining hopeful. #DOUGSTRONG


Later note: Spinal tap went great! He is just resting now! They put him back on Adivan last night so he was able to get a full 6 hours of sleep last night 



Last night Doug had a good night of sleep, seroquel did it’s job. Talked with the doctor today. They began steroid treatment last night to see if it will help decrease the swelling in the brain. There were a couple small psychosis episodes today, so administering lower dosage of seroquel to keep the brain calm. The steroid treatment will take about 2-3 days of doses. After this treatment they have decided to do an IVIG treatment to also combat the inflammation. This will take approximately 3-5 days. Their thoughts are to try and do what we can now to combat these symptoms and possibly begin to treat any sort of autoimmune process that might be going on. Results won’t be in for approximately two weeks. In the mean time, after the week of these steroid and IVIG treatments we may move him to rehab center to await the results. Reason being, at that time there won’t be much else they can do other than anxiety and symptom management until we have a clear diagnosis. After we get the results We may be re-admitting him to UofC if the diagnosis is not CJD and can begin more specialized treatment for the given diagnosis. #DOUGSTRONG


Doug’s level of consciousness: He is conscious and aware, of course in and out of sleepiness. He has a big smile on occasion and will grab your hand but really isn't talking much. Generally, when new people walk in we will ask “who is this?” And he will say their name and that's about all we will get. Nods yes and no, I can usually get a thumb up from him or a kiss on the cheek or blown at me. Not a lot of communication though. When he gets more burst of energy sometimes you might get more out of him but then he exhausts himself and it's nap time. #DOUGSTRONG



Last night was a great night for both Doug and Laura. They were both able to get about 7 hours of sleep. Doug sat up today on the side of the bed with the help of Physical therapy and Laura got a long a waited for hug from him! Laura was even able to hand Doug spoonful’s of oatmeal for him to feed himself for breakfast. It was a much more refreshing day today. Still shaking a bit and twitching but very encouraged today. In all, he was much more alert today. Laura handed him a stress ball and he throw it at her. She handed it back to him and he aimed to hit her several more times. Had a small episode after just due to the fact that he had trouble settling down.

We also received some wonderful news that along with the original labs that were sent out in Florida, they DID in fact send out for the newest CJD lab test. The doctors were very happy with this as well because now that means we may have some results in by Friday. No med change as of today, since last night went well, but we will begin the IVIG treatment tomorrow. This will wil work much like dialysis to flush his system of any possible antibodies that could be causing an autoimmune infection. The IVIG will be completed most likely on Saturday which means that we might be able to be discharged Sunday (if all was tolerated well). If the CJD test comes back negative, that means that we will still need to be discharged to a subacute rehab, to await the new lab results sent out by UofC. These will determine what sort of autoimmune disease we are working with. #DOUGSTRONG


 2nd update 5/16:
CJD specialist was in. Said this was a good day. Said it can happen with this disease. Doesn't want to put too much stock into it- seroquel could be putting brain more at rest which allows him to have more calm & alert moments. Said his symptoms are very evident of CJD. Just need to wait till Friday to get the results for a final diagnosis! Keep the prayers coming! This waiting game sucks! #DOUGSTRONG

Doug’s Story

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