My Sweetie is Gone

Last Thursday while I was at the doctor the hospice nurse and aid were here gently giving Louie a bed-bath. They had just finished a few minutes before I walked in the front door. They told me he did just great and was resting comfortably. The nurse was talking to me about some of his medications and I suddenly put my hand to my heart and said I had chest pains. A second later the Visiting Angel came from Louie's room and told the nurse to come quickly. She came back out and told me Louie was not breathing. I ran to him and didn't want to believe it. When I saw his chest not moving and felt no air from his mouth, I sobbed and sobbed. I laid my head on his chest and rubbed his face - I didn't want to let go of him. I couldn't stop crying. My daughter, Stephanie, came to hold me and we cried together. She called Pastor Terry and Sandi who arrived quickly. They were both trying to comfort me. I kept saying "I wasn't with him"!! They told me I couldn't have been with him every second and that it could have happened any time. The nurses had thought he would be alive for another week, so they were shocked, too.

I sat on the side of the bed for a long time and wished I could have laid next to him. I knew this was coming and had been praying that God would take him swiftly so he wouldn't have to suffer any longer, but I couldn't bare to lose him.

Later when the funeral director came to get him, they said they would have him on a cot and would leave his face uncovered as they rolled him toward the front door, and that I could say my "final goodbye". When they brought him to me, I just laid my head on his chest and sobbed so hard that it was hard to breathe. I kissed his cheek three times to say "I love you". I then turned to Stephanie's arms and fell apart. Both Sandi and Pastor Terry also held me. This was the hardest thing I have ever experienced.

The nurse kept reminding me about how I put my hand on my heart and said I had chest pain right at the time he passed away. I will never forget that.

Last Sunday, visitors who loved Louie, as he did them, stopped by to see him not realizing his condition had progressed SO rapidly. Each time he saw them, he just sobbed. He didn't want to leave all those he loved. It just broke our hearts.

The "Living Angels" (Kim and Virginia) were here 24 hours a day the last 3 days, and they were SO wonderful - a true blessing that I will never forget. As Louie got worse, we had to give him his medications by liquid a few drops at a time, and also with creams, as he could barely swallow. It just tore me apart to see him getting worse. I kept telling him it was okay to "let go" and be with God. He could barely speak, but when he did, his words were always, "I need to take care of you". And he would cry. His close friend, Jim, told me that the day he took Louie to Eugene for his last MRI, Louie kept saying that over and over - that he had to be here to take care of Connie. Those words will forever be etched in my mind.

I printed a picture of Jesus and then added the words, "Into Thy Hands I commit my spirit", and then printed angels at the bottom, and hung it on the wall right next to him. He said he could see it and that is was nice. I told him over and over that I would be taken care of by so many people and that he didn't need to worry about me. I told him to take Jesus' Hand and to save me a place in Heaven, and that we would ALWAYS be in one another's heart, and to send down good wishes to me from Heaven so I would feel him taking care of me.

Stephanie and Gabriella arrived here on Wednesday evening. When they walked into his room, Steph said they were there to take good care of me. He cried, but couldn't respond. I have a feeling that hearing what she said gave him the comfort he needed to finally "let go" the next day.

Friday was a tough day going to the funeral home to make arrangements. It just didn't seem real. The funeral will be next Friday, at 11:00, at Immanuel Lutheran Church in Albany, OR. It is going to be a very special Memorial Service. Tammy is going to give the Eulogy - I know it will be beautiful.

Having little Gabriella here adds so much sunshine to our home, but my heart is aching so much inside and I feel lost without my sweetheart. I know the road ahead will be hard, but I am surrounded by so many wonderful people who will help me through it. I just have to allow myself to grieve and eventually heal. I know God will give me strength.

Once I'm able, I plan to write a poem in memory of my loving husband to add to this blog.

I wish all of you a Blessed Christmas and Happy New Year filled with good health.

Love,

Connie

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

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.

Latest Update - December 6

Today was a real tough day. When Louie got up today, he could barely even stand, let alone walk. Neither one of us had slept all night, so I got him back into bed and he slept for 2-1/2 hours which helped a lot. We were supposed to go see Dr. Englander at 11:00, but I knew he was too weak for me to even get him ready and into the car. I thought about calling 911 as I was so worried, but I called Dr. Englander's cell phone instead. I told him how badly Louie was doing and asked him a lot of questions. He said that the high-resolution MRI that was done yesterday came back showing signs on the brain indicating CJD. He also said that he would be working together with Dr. Wang throughout the course of this illness. He made some medication adjustments with me over the phone and we talked at length.

When Louie woke up, I told him about what Dr. Englander said. He just broke down sobbing. Even tho he has "known" all along that this was most probably CJD, he still had hopes of a miracle. Reality hit hard today and we both just totally "lost it". We now have to face what is ahead knowing how horrible this disease is. I will NEVER understand how there can be a disease that is as CRUEL as this one!! We are devastated and at a loss for how much time we have left together.

Yesterday a Hospice Manager was here to do a consultation which lead to the decision to begin hospice service. She was SO wonderful and encouraging as far as treatment for Louie here at home. The extent of their service is unbelievable and will be a great comfort to both of us. She will be returning tomorrow to do the "admission" here where we fill out all the paperwork and she will then immediately appoint a nurse to our case. As the disease has progressed so rapidly, I am unable to take care of Louie by myself, so this service is a "God-send".

Tomorrow morning Louie is having a "swallowing and speech" therapy evaluation. His cough seems worse each day as liquids and little particles of food are going into his lungs. They will teach him how to swallow differently and also which foods/beverages will be best to consume. I worry about the cough as it is such a hard cough and tires him out.

We have gone through "ups and downs" with our emotions all day. There are still the feelings of anger, disbelief, frustration, fear and deep sadness. I feel like I'm in a "fog" and things aren't real at times.

Having Louie's son, John, arrive tomorrow will be a huge blessing. They can have extra-special time together and enjoy each other's company. I know it will take Louie's mind off everything at least most of the time.

And then Tammy will be here a week from today for 6 days which will also be wonderful for Louie - he can't wait until she gets here!! Tammy has been SOO loving and supportive which means the world to both Louie and me.

The following week will be Christmas when Steph, Pete and Gabriella arrive. I hope and pray Louie will still be able to enjoy little Gabriella as he loves her to pieces. It will be good for me to have them here - that's for sure!!

I'm so thankful that Hospice will be here throughout this illness to keep Louie comfortable and take good care of him!!

Our church family continues to be such a strong and loving support to us - we continue to be overwhelmed by the kindness, thoughtfulness and love from so many.

I find myself unable to believe that this has all happened SO quickly. It was just 2months ago that we had our professional portrait taken and Louie was fine. When I look at the picture, I cry because we were "care-free" then and everything was normal.

I know that we have to give this all to God - there is no way we can fight this battle on our own. I ask Him to help me feel His arms around me and I can actually sense myself leaning back into God's arms. This is a huge comfort to me. I have three excellent books we are reading together that Steph sent us - they give us much comfort and peace.

I will be writing on this "blog" often to keep everyone up to date.

Thank you for all your thoughts and prayers - we can't tell you how much it means!!

With tears of sadness.....

Love,

Connie

Update - December 4

Just got a call from Dr. Englander's office saying we have to go to Eugene either tomorrow or very early Thursday (before his doctor appointment) for a stronger MRI and another x-ray. She will call me back today to let me know the exact day and time.

"It's In The Valleys I Grow"

-- Jane Eggleston
Sometimes life seems hard to bear,
Full of sorrow, trouble and woe
It's then I have to remember
That it's in the valleys I grow.

If I always stayed on the mountain top
And never experienced pain,
I would never appreciate God's love
And would be living in vain.

I have so much to learn
And my growth is very slow,
Sometimes I need the mountain tops,
But it's in the valleys I grow.

I do not always understand
Why things happen as they do,
But I am very sure of one thing.
My Lord will see me through.

My little valleys are nothing
When I picture Christ on the cross
He went through the valley of death;
His victory was Satan's loss.

Forgive me Lord, for complaining
When I'm feeling so very low.
Just give me a gentle reminder
That it's in the valleys I grow.

Continue to strengthen me, Lord
And use my life each day
To share your love with others
And help them find their way.

Thank you for valleys, Lord
For this one thing I know
The mountain tops are glorious
But it's in the valleys I grow!

Update on Louis - November 30, 2007

Today was Louie's first appointment with his new Internal Medicine primary doctor (Dr. Wang). She was a wonderful doctor. I didn't sleep all night last night knowing how important this appointment was and so anxious to get some assistance as Louie has declined badly this week, especially in the last two days.

He was so wobbly on his feet this morning that I was afraid he would fall on the way into the doctor's office. Once we got there, I asked for a wheelchair. I asked the doctor about his terrible cough, and we talked about how he has gotten so much worse this week. She is putting in an order for speech and swallowing therapy. His cough is from being unable to swallow correctly sometimes (which a person doesn't even realize) and so some liquids and bits of food are being inhaled into his lungs. The therapist will help him with which food and beverages are best to have, and which ones to avoid, etc. She will also work with him on speaking as his words are slurred at times and he has trouble getting his words out at times.

I asked her if we could get a "disabled" card for the mirror of the car for us to park in the "handicapped" parking spots. Also, she gave us a prescription to get a wheelchair at a health store.

We talked a lot about getting hospice started here at home. Things are to the point where Louie and I both need the help of this beneficial program. She wanted to talk to his Neurologist this afternoon and then put in the order for the Hospice agency to contact us on Monday to get things started. Well, Dr. Englander was not in today, so his nurse was going to ask one of his partners to call Louie's primary doctor to coordinate getting this going. His nurse was going to call me back and let me know - well, it turns out that Dr. Englander's partner said to wait and have Dr. Englander himself talk to Louie's doctor here (Dr.Wang), but Dr. Englander won't even be back in the office until Tuesday. I AM SOOOOO MAD!!!! We needed to get this started right away!! Now it's going to take longer to get this program started.

I called my insurance company today and got a Case Worker who is going to be working with me very closely. She is an RN and was SO nice. She will be calling me on Monday and we had planned on her talking to the Hospice people who would have been starting. So when she calls on Monday, now I have to tell her about the "delay" that occurred today. She told me to call her ANYTIME as often as I want to about anything and everything. Thank God we will have some support on a daily basis just a phone call away!!!

Louie is having bad pain in the back of his neck - I give him a pain pill for that, plus we use heat on it which helps some. He now has symptoms of uncoordination in his left hand that are just beginning - his right hand is not working at all. He is so fatigued most of the day, and it is just such an effort for him to do anything. This fast decline of his condition has shocked me and is too hard for me to see. I just want to wave a magic wand and make him all well!!!!! We hold each other and sob together. This is the hardest thing I have ever gone through in my whole life!!

I am determined to get him out of the house at least a couple times a week even if we just go for a ride. We can go to the mall and I'll get out the wheelchair and we'll just walk around to be near other people.

Our church meals kind of quit arriving, so my friend, Sandi, made some calls and got that all started up again. It is a huge help.

I will try to send more information once we get the hospice all set up. That just can't get here fast enough!!

Oh, I wanted to tell you that Leonard Wheeler called Louie two nights ago. He is going to come visit us - he lives in WA.

With a very heavy heart.....