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

Wed Dec 12

Hey Everyone, this is Tamara.

So things have been very very tough the past couple of days. While the hospice care has started, it is very slow moving. According to Connie, on Tuesday dad passed out and was not breathing, which sparked her to call 911. The hospice apparently does not want people to call 911, we are supposed to call hospice, but what else was Connie to do??? Unbelievable to me how horrible the US health care system is. Louie is also beginning to show personality changes, as Connie put it, he is becoming a bit witty! Sadly, he is also beginning to have visualizations, like on Tuesday when he thought that the nurse had four eyes.

We can only pray that he is eased from all of the pain he is in. Pray also for Connie to have strength and that she gets some rest! Last night the pastors son-in-law stayed over as to watch Louie so that Connie could get some rest. I (Tamara) arrive in Eugene tomorrow morning to see him for a few days, and to sadly say our final goodbyes. I love my dad and it is not fair that he has to be in so much pain!!!! Why does life have to be so tough!!

More updates for Monday, Dec 10

(Posted on behalf of Connie) I am in full-time care 24 hours a day with Louie and it is getting harder and harder for me. I'm not strong enough to hold him up, move him, etc. My back is really giving me trouble. I also have to lift the wheelchair to turn corners in the house, get through doorways, etc. Louie weighs 200 lbs. so it's really hard for me.

I called both his insurance and mine today to see if I could get Home Health Care where they do all the heavy things and are here to help whenever, but neither insurance covers that. The hospice nurse who is assigned to Louie was here today for the first time. She is SOOO wonderful - I'm SO thankful for that!!!

Louie is unable to move hardly at all anymore, plus he is beginning to have lots jerking of his arms. It is SO hard to see all this!!! My heart is breaking for what he is going through - from a big, strong man two months ago, to this horrible condition!!! I haven't slept for almost 5 nights now. He keeps waking up with pain in his hand, wrist, and fingers, so I was giving him morphine, but it wouldn't help, so now have pills from his neurologist (who I talked to yesterday) for nerve pain. Last night was the first night he slept all night. But we didn't get to bed til midnight as he and John (his son) had such a hard time saying their final goodbyes - it was SO heart wrenching!!! Then I had the alarm set for 6:00 to get John to the airport shuttle on time. So I was SOOO tired.

The hospice team called in a volunteer this afternoon to come and sit with Louie so I could take a nap. I was sound asleep when Sandi awakened me (as she had just brought dinner over) and said Louie was in pain and needed the morphine. I gave it to him, but it only helped for a couple minutes just like before. I called the neurologist's office again tonight and got the doctor on call (Dr. Englander told me yesterday that he had informed ALL his associates of Louie's condition). I have to start giving him the new pill 3 times a day to keep it in his system so the pain won't keep returning. Sandi thankfully packed up lots of things into boxes for me, and then I had a neighbor and his wife come over and get the furniture, exercise bike, etc. all out into the garage. Now I have to vacuum that room good before they get here with the bed. It will be a lot better for sure as he is SO weak now and the bed will raise up so that he can be in a sitting position which will make it much easier to get out of the bed and into the wheelchair. I had to move tons of things in the garage to make room for the furniture out of that room. This is truly all so hard on me as I'm not supposed to be doing things like this with my heart condition. But I know I just have to do it.

He is very depressed tonight and just wants to lay on the couch, which is almost impossible to get off of as it is so low. I can't imagine going through this CRUEL, HORRIBLE disease - no one should ever have to go through something like this!!!! It is SOOOO hard to understand!!! I just break down crying to see him suffering so!!! My heart is breaking!!! I don't think he has much time left - things are moving so quickly now. This just all happened way too fast and is moving too fast each day. His son, John, called to say he got home safely. He thanked me for taking such wonderful care of his Dad and told me I'm doing incredibly well and how much it means to him. That was so nice. I wish John could be here more - he was a HUGE help!! And I just love him!! I pray that he will sleep all night tonight so I can get a full night's sleep!!!! I can't keep going without the rest I need at this time. Please pray for strength for me to get through this somehow.

Latest on Louie and Connie

(Posted on behalf of Connie) I had to take John to the shuttle this morning - just hated to see him go. John and your Dad had a really special time together - fun, closeness, tears and "closure". I have always loved John - he is a great guy!!! He deserves a wonderful woman in his life. I wanted to tell you what Dr. Englander told me about the latest MRI. He said that on the DWI sequence, the cortex has high signal (looks white) - this is the first sign of CJD. Then the basil ganglea (sp?) which is the gray matter looked normal, but will change as the disease progresses. So now I know what the findings were so I can understand better. The Neurontin medication he had me start last night helped Louie sleep ALL night with no pain. I am SOOO relieved. He is still sleeping, in fact. He woke to say goodbye to John this morning and we talked a while when I got back home, then he went back to sleep.