LOUIS JAMES WHEELER - 1943 - 2007

It is a somber day in many households, for today our beloved Louis James Wheeler traveled through the doors of heaven. Louie expired around 11:30am today, after a short yet painful and difficult battle with CJD.
We ask that you pray for strength for the family during these difficult times. The funeral will be held on Friday, December 28th, 2007 at 11:00am in Albany, OR. We will post more information as it comes available.
I LOVE YOU DAD AND I WILL MISS YOU SO MUCH!!!!! :(

Frightening Morning

Very early this morning, we had a real scare. I have a baby monitor in my bedroom which is connected to the room where Louie's bed is. I heard him calling my name, so I ran to his room and he said he was thirsty, so I gave him some water. He said that felt better so I went back to bed. About 5 minutes later, he called my name several times in just a few seconds, so I RAN to his room and he said he couldn't breathe. I called out for Tammy to come right away. I then got the morphine and gave him some as it is supposed to help with breathing difficulties. Then I called the Hospice number right away - the nurse told me to give him a little more morphine and she would be coming right away. She was 11 miles away and it seemed like it took forever for her to get here. Tammy and I were so scared!!! We thought we were "losing him" right then. I kept feeling his diaphram to see how his breathing was - it would be real shallow, then a little stronger, and even stopped at times. I knew I had to hold myself together, but it sure was difficult. I kept telling him I loved him, and held his hand and rubbed his face. Finally the nurse got here and she checked everything and said that his lungs sounded good and so did his heart. She gave him some Klonopin which helps anxiety and reassured us that he had an anxiety attack which caused the trouble breathing. We told her how we couldn't give him his anti-depressant anymore as he has so much trouble swallowing, so she said they would put in an order for a liquid form of an anti-depressant that we will get tomorrow. There is no doubt how depressed and scared he is going through this horrible disease which shows new symptoms every day. It is SO hard for Tammy and me to see him going through all this - our hearts are just breaking. The nurse also put in an order for oxygen to have here in the house in case this happens again - she said that will help him a lot. Between the morphine and klonopin, he has been sleeping soundly. Tammy and I are both torn between not wanting him to "leave us" and wanting to "let him go" so he won't keep suffering. It is the hardest thing we both have ever been through!!!!!

He had such a tough day yesterday as he was crying over and over SO hard that it broke our hearts. He is thinking so much about his whole life (which is what happens when a person is dying) - we could actually see the pain coming from his heart and soul. I told him that he would always be in my heart forever, and that I would always be in his heart forever. He nodded his head. It is so hard for him to talk.

Three different couples from church came to see him this afternoon. He loves all of them and, as they talked together, he just sobbed. He doesn't want to leave everyone who loves him so much!! They were all crying, too.

I am so afraid of the days to come knowing I will witness the many new symptoms as they progress through this horrific disease. I don't know if I can bear to see him go through all this. I have people lined up to stay with me both Monday and Tuesday nights - they are called "Living Angels" who you hire to help in any way you want. They will be awake all night and alert me if anything happens where I will need to help him with either morphine or oxygen, etc. They will also be here for 4 hours on Tuesday and 3 hours on Wednesday. My daughter, Stephanie and granddaughter, Gabriella will get here late Wednesday afternoon. That will be a huge support for me during the toughest days ahead.

Having Tammy here has been a gigantic blessing to me, and I can never show her enough how special and precious she is to me. We have bonded together and been a strength to one another. She has also done SOO much for me to help me out with things I will have to deal with after Louie is gone. She just amazes me with the things she has done and even thinks of that I can't even deal with right now. I will be forever grateful to her and am honored to be her step-mother.

I pray that God will take Louie soon so he won't have to keep suffering, and yet I can't bear to think of losing him. Everything I look at reminds me of him. I am naturally afraid of being without him, and know that the grieving process won't be easy. With the help of my church family, wonderful friends and family members, I know that I will somehow get through it. I ask God for strength, courage and comfort every day.

We appreciate all your many thoughts and prayers more than we can say.

Love,

Connie

Update - Saturday

This is Tammy. I arrived here on Thursday to spend time with dad and Connie. It has been so tough to see dad in the state he is in. He is completely bed ridden, has extreme difficulty speaking and swallowing, is beginning to "zone out" frequently, and sleeps constantly (from the disease and all the medicines). Dad does understand what is happening to him, as he says, "I am getting holes in my brain". He often says witty remarks or beams a bright smile to know that he is still with us. Every day gets harder and harder, as we know that we are getting closer and closer to "the day". Today we met with the funeral director to begin discussions on that process. We have to start now because since this is CJD, he has to be creamated in a controlled environment. The funeral director was so sweet, and will assist in helping to find out creamation requirements for CJD (e.g. what can be creamated, what cannot be, such as bones). In addition, we are working with the CJD Surveillance (Prion Disease) Center in Cleveland, for they will help to coordinate the autopsy, find a controlled environment, confirm his brain disease, and take samples for research, and covers all of these costs (excluding funeral arrangements). Dad/Connie have agreed that dad will allow his brain to be used for research, for they understand that will benefit current and future Wheeler generations.

I am glad that I am here not only for my dad, but also to help Connie. She is finally getting good rest and is surrounded by people who love her and dad. It really amazes me to see how moving to Oregon, finding a great Lutheran Church, and all of the love and support of Connie have helped dad to finally connect with God and our Lord Savior Jesus Christ. This will really help dad to be at peace in his final days.

We just ask everyone to continue to pray for dad, to relieve him of his pain and suffering, and to give Connie and all of dad's kids including me, Michelle, John, and Dawn, the strength to get through these tough times and the tougher times ahead.

Christmas 2007 Letter to Family and Friends

My Christmas letter this year is extremely difficult to write. As many of you know, my sweetheart, Louie, is in the midst of the deadly disease called CJD. This all came on so fast and is moving too quickly. This disease is extremely rare (about one in a million), but in Louie’s case, it is a genetic disease, which has already taken 10 family members. We are struggling to come to terms with the reality of knowing we will be losing each other in the near future. This is the most difficult pain I have ever experienced.

Even at this difficult time, we can see so many miracles that God has and continues to bless us with. First of all, God had worked in Louie’s heart and life the past year, which brought Louie to know Jesus as his Friend and Savior. Thus, we know that God had foreknowledge of this and ensured that Louie would never be separated from the love of Christ. What a huge comfort this is to both of us!!!

Other blessings keep coming – reconciliation with estranged loved ones, family members coming for visits, countless acts of kindness, love and support from our church family, Pastor Terry who is a constant source of strength and comfort, my dear friend, Sandi, who is truly an angel from God, finding compassionate and caring medical staff, and now the gift of hospice which gives us so much help and comfort.

I can’t leave out the joys of this past year as well. Our little Gabriella turned one in November and is such a happy, adorable, and joyful child. We are so very thankful that God brought her back to full health after the spinal meningitis right after her birth. Every moment with her is pure delight. She remembers “Gramma” now and every time she sees me, she wants me to pick her up (that sure warms my heart immensely). Being a grandparent is awesome!! We have had precious time with Steph, Pete and Gabriella all year!!

My sister, Julie, and niece, Heidi, met Steph, Gabriella and me in Seattle in July for a long weekend. We had SOOO much fun together. Julie treated us all to dinner at the top of the Space Needle – it was an awesome experience we will all remember and cherish. Mt. Ranier was in perfect view with the clear blue sky.

We didn’t take any trips this year due to my knee surgery, but did go to the Coast a couple times. Louie spent countless hours in the mountains on his ATV and hunting – he absolutely LOVED being in the mountains. It breaks my heart that his life is being cut short so he can’t do the things he loved so much!!

I just can’t imagine my life without Louie – we did everything together. I will be just lost without him. It is almost unbearable to think about. I know that I have to remember what it says in the Bible: “Can anything ever separate us from Christ’s love? Does it mean He no longer loves us if we have trouble or calamity, or are destitute, in danger or threatened by death? No, despite all these things, overwhelming victory is ours through Christ, who loves us. I am convinced that nothing can separate us from God’s love - neither death nor life, neither angels nor demons, neither our fears for today nor our worries about tomorrow. Nothing in creation will ever be able to separate us from the love of God that is revealed in Christ Jesus our Lord.” Hence, it is HIS birth we celebrate each Christmas!!

Sending warm wishes to each of you with love,
Connie & Louie