Another Monday

Dearest friends,

Here we are, another Monday. And we are still waiting ... for God's perfect timing. 

Last Thursday daddy had a very good day. He was the most lucid he had been in a long time. He and Barbara spent some great time together, talking and sharing about their lives together over the past 35 years. What a gift from God that was for her. Wayne came in Friday night and we spent the night with them so Barbara could work Saturday. But daddy was startled awake and became very confused. By the time that was all settled out she decided to stay home. The rest of our weekend was quiet. Wayne went home Sunday morning but continues to keep his suite case packed and in the trunk. 

Our nurse, Andrea, was here earlier today. Barbara asked the hard question - How long? A week, maybe two. Then their priest came to the house and we celebrated our Lord's supper with daddy for probably the last time. And we prayed praises to our heavenly Father for the gift of our earthly father. We met again with our social worker this afternoon.

Daddy continues to be very weak. We are grateful for our CNA who bathes and shaves him. She is so gentle and keeps him looking comfortable and handsome. He is able to swallow liquids and is still taking pills for us.

Please pray for:

- God to call daddy home in His perfect timing

- Peace that passes understanding for our family

- No suffering

- Unity for our family. Satan would like nothing better than to separate us right now.

Clinging to the Solid Rock.

There is no other way to say it.

Dear family and friends,

It's hard. There is no other way to say it. We are home, daddy is on Hospice and it's hard. The range of emotions we have all experienced has gone from one extreme to another. We have met as a family with our nurse and social worker, the Chaplain came last week and our CNA came this week. Medications have started to be decreased, some eliminated. We change him, bathe him, give him medication, something to drink, the occasional bites of food, and all the while loving on this man we call husband/daddy/papa/uncle puddy/friend.

The weekend was very busy for us. Daddy's sister, Patsy and her daughter Deann, flew in from Pennsylvania Friday night. It was so great to see them both again after so many years. We laughed, talked, cried, and laughed some more. Saturday was full of old friends coming by to visit and we celebrated Ricky's 50th birthday. Sunday was a little quieter but full of wonderful memories with Patsy and Deann. And lots of family connections made on Facebook. I can't even imagine how difficult it was for Aunt Patsy to say goodbye Sunday night to her only living brother.

This week has been fairly uneventful. We have good days, okay days, and then sometimes just a day. But knowing that we have your love and prayer support helps us and we can feel it all the time.

Wayne stayed with me until Sunday. It was hard for me to let him go home but I understood why he had to leave. He is keeping a bag packed in the car all the time. Plans are to come back this weekend, or sooner if needed.

I'm sure there is much more I could say. You know me, never at a loss for words. Right now the words just won't come. But the tears do. It's hard. This is something I never dreamed I would have to walk through. It's not fair. But it is all a part of God's plan.

Please continue to pray for:

- God to be merciful. We do not want daddy to suffer

- Peace that passes all understanding for the family

- Our wonderful support team from Community Hospice

Waiting on God's perfect timing.

Settling in at home

Good afternoon my friends,

Yes, we have daddy at home. But yesterday was anything but smooth and easy.

As Cindy and I were about to leave for rehab, Barbara called to say she arrived to find daddy having chest pain and increased heart rate. She said she could not take him home that way and was putting Hospice on hold. She thought he should go to the ER and then we could get the PET scan ordered and she would know exactly what was going on with the colon cancer. The next few hours can only be described as extremely emotional, raw, frustrating, and painful. The reality of taking daddy home hit hard for Barbara. She told me she was afraid to be alone at home with him. I would be leaving and she wanted me here. After much discussion, tough love, heavy tears and admission of fears, she consented to take him home. I promised her she would never be alone at home with him. We spoke to daddy about where he is physically and emotionally and the fact that he has basically stopped eating and is drinking very little. We discussed his wishes for resuscitation should his heart/breathing stop. We talked about if he wanted to be intubated again and stay in the hospital. He just wanted to come home. I called Wayne, gave him a quick update and said it was time for him to head south.

Mary, the Hospice admissions nurse, came at 12:30. I have nothing but good to say about her. She spoke to us as a family, spoke to daddy, and helped us to see that what we were about to do was the best thing for him. She talked to him about in-patient hospice and coming home. He wanted to be at home. Then she had "the talk"...what were his wishes when his heart/breathing stops. He didn't even have to think about it...do not resuscitate. When Mary asked if he wanted to sign that paper or have Barbara, he said Barbara could do it. She looked at me and said, through sobs of tears, "I can't sign that, you do it". But I'm just the daughter and as the wife it was her responsibility. I held her tight and said I would hold her hand while she signed so she didn't feel like she was doing it alone. By 4pm all the paper work was done, meds ordered, hospital bed and supplies delivered and set up at home, and we were on our way. Wayne had a safe trip and arrived at my mothers about 8:30 PM. The evening was fairly uneventful. The evening nurse came and did his "tuck in" visit. Julie spent the night with Barbara. Daddy slept well all night, only waking at 3am and 6am to be cleaned up and then right back to sleep. He took his morning meds today with no problem but his blood sugar was low and the nurse said to give his juice and a couple peanut butter crackers which he ate. A short time later all was well.

Wayne and I came to their apartment this morning. We are staying here with daddy and Barbara until tomorrow afternoon. Barbara needed to run to the pharmacy and grocery store today. And she is working tomorrow so it makes the best sense to spend the night. We met our nurse, Andrea, today and she brought us a few more needed supplies. What a blessing they are to us all. It is so very comforting to know we can call any time for any thing.

Daddy continues to complain of chest pain. Sometimes he describes it as pressure, other times as a squeezing sensation. So far the Ativan and Percocet are doing well. He has only needed something for nausea once today. We have had to learn to give him insulin shots. Barbara and Julie have done great. Cindy doesn't think she will be able to do it but she has learned to do lots of things she said she couldn't do for him. His breathing is a little more labored. This is partially due to the fact that he sleeps with his mouth open and the oxygen is through a nasal canula. His only food today has been the 2 peanut butter crackers and a vanilla wafer with a little ice cream on it. But he has asked for and drank some water as well a some Pedialite (less sugar than Gatorade). He also drank 1 Glucerna. He has been snoring since Barbara and I gave his a bath this evening. In fact, he slept through his bath.

I am very grateful to have Wayne here with me. His employer was very understand and said go. He was able to work 8 hours today from here.

Tonight, please pray for:

- God to be merciful. We do not want daddy to suffer at all

- Peace that passes all understanding for the family

- God's grace to those who need to tell him goodbye in the next few days

- Safe travel for his sister, Patsy, who is traveling with her daughter from PA this weekend to see him

Still clinging to the Solid Rock while I praise Him through this storm.

We are going home on Hospice

My dearest friends,

Okay, where to begin. I guess where we left off. Last Thursday was great for everyone. Cindy and I enjoyed a few hours at the beach. Daddy participated in therapy morning AND afternoon and was eating fairly well. He did open up to Barbara and said he was afraid of dying while here at rehab and being alone. He wants to go home.

Friday things began to change. Daddy had asked for something for anxiety, he was having panic attacks. He was given Ativan .5mg about 10:30am and was sound asleep when we arrived with lunch for him at 12:30. He had eaten very little of the tray he was provided at noon and at 1:30 he was given his antibiotic on basically an empty stomach. That began a cycle of nausea that really has not stopped since. We asked that he not be given any more Ativan during the day as it really knocked him out. So, no therapy on Friday.

Barbara went to work on Saturday and I came to rehab to stay with daddy from 10am to 1pm. The nurse reported he had been having a good morning: ate all his breakfast, took his pills, was fully dressed and went down to therapy. When I arrived a little after 10 he was sitting in the wheelchair fully dressed complaining of nausea. He had already been given Phenergan for this. Within a short time he wanted back in bed and went sound asleep. He basically then slept for the rest of the day. So, limited therapy on Saturday. Due to the nausea continuing he also ate very little if any at lunch and dinner. Barbara was very worried he was not eating. He cannot afford to loose any more weight. He also began coughing more with a rattling sound in his lungs.

Barbara spent Sunday with him. Again he complained all day of the nausea, heartburn and now a headache. She tried to get him to eat but could only get him to drink the Glucerna most of the time. He will not drink water, doesn't like the taste, so we are concerned about dehydration. He spoke a lot of wanting to go home. When Cindy arrived Julie and Ricky were already here. Shortly after Barbara and Ricky went outside and had a very long talk. Ricky lost his mom to ovarian cancer a few years ago and she was on Hospice. That talked helped her to see that they were there not just for the end but for the now. She made the decision last night to take him home on Hospice as soon as it could be arranged.

Cindy, Barbara, Ricky and I met for breakfast this morning to be sure we were all on the same page. We agreed to get the ball rolling and get him home as soon as possible. We told the nursing staff when we arrived we wanted to talk to the psychiatrist and house doctors before they saw daddy today so we could tell them of our wishes. Therapy did get him up in the wheelchair this morning so Barbara and Cindy took him outside for about 10 minutes. Hope to post those pics later tonight.

Daddy was already scheduled to be seen by the house psychologist, Dr Skip, who was wonderful. We spoke to him privately before and after he did the evaluation. And he was so patient as daddy kept falling asleep during the interview. He is depressed but says it is from everything he has been through. Dr Skip did not want to put him on any medication as he is already on so much. We were very glad for this. We told him of our wish to take him home and why and he thought that was the best thing we could do. His report will be on the chart and Hospice can get a copy so they can take over that area for us.

We spoke with Jane, house social worker, next and told her of our desire for Hospice. She made the call and at 3pm we met with Donna from NE FL Community Hospice. She did a great job explaining who they are and everything they can do for us. Barbara signed all the papers. All we need now if for the house doc to say okay for discharge to hospice at home and Dr Patel, daddy's oncologist, will be his primary physician.

All this to say....we are going home on Hospice. Equipment has been ordered for the home and will be delivered tomorrow. The couch in their living room is being removed now to make room for the hospital bed. We have a Walmart list for things we will need until Community Hospice can bring our supplies. Mary, the admitting nurse is coming tomorrow at 1pm to do the nursing assessment and as long as we have the discharge order daddy will be transported home when she gets through.

We still don't know where we stand with the colon cancer. It has been 3 and 1/2 months since his last PET scan which showed recurrent colon cancer after 12 chemo treatments. Hopefully daddy can have another PET scan very soon so we can know exactly what we are dealing with.

He is still complaining of nausea and sever indigestion. Nothing seems to be helping either one. Dinner is here and he wants nothing to do with it. So far he won't even drink the Glucerna. The one good thing is he has taken the last of the antibiotics. We are hoping the nausea will now go away.

Please pray for:

- Smooth transition home

- Peace that passes all understanding for the family

- Daddy's appetite and desire to drink fluids to increase

- PET scan to be ordered quickly

- God to be merciful

And I'll praise you in this storm

and I will lift my hands

that you are who you are

no matter who I am

and every tear I've cried

you hold in your hand

you never left my side

and though my heart is torn

I will praise you in this storm!

Standing firm in the midst of this storm.

A funny for you

Me - ‎​On our way to have lunch w/daddy.

Wayne - Take pair of Visegrips. If he's bad, clamp a toe! :)

Cindy - Lunch with Daddy $10, pair of visegrips $5, look on Daddy's face with toe in visegrips....painfully priceless from lmbo.

I'm glad yesterday is over

Good Thursday morning,

Thank you all for your prayers yesterday. It truly was a very difficult day. When I got to LifeCare daddy told me he was going home so he didn't have to look at those 4 walls any longer. I suggested it would be no different at home and he responded that he would be able to move from room to room there, that he would get himself in a wheelchair. So I laid his bed flat, he would be in his own bed at home which doesn't adjust, and asked him to sit up and swing his legs over the side of the bed. Well, I don't think I have to tell you how that went. And it was down hill from there. He refused to do or listen to anything any of us had to say. And he said I had just enough medical knowledge that made me difficult to deal with and wanted Barbara to make me leave.

Cindy, Barbara and I then began to discuss what our options might be in getting daddy home and caring for him. Thanks to my best friend Teri, the hospice nurse, I had great information about what was available in that arena. Unfortunately that info was not accepted as Barbara believed Hospice was only for people dying. She did not want to hear what I had to say and daddy was making fun of my talking. I stopped talking, picked up all my belonging and left. I felt like they did not want my help so I was headed back to my moms to pack up my stuff and go back to GA. Barbara found me in the bathroom and we talked. I told her daddy did not hurt my feelings, she did. She did not want to hear what I had to say so they could make the decisions and handle it on their own. She asked me to please not return to GA. But I had to get out of there. I went to get a bite to eat and think. Talking to Wayne helped and my next stop was to be the beach for some walking and talking with God. But before I could head that way Barbara called and asked me to come back. She had arranged a meeting with the social worker and wanted me to talk to her about Hospice. So back I went. Barbara and I talked, cried, apologized, and went on.

Our meeting with the social worker went great. Many options were discussed. We decided, as a family, that it was best for daddy to stay where he is. We do understand that he may never get any stronger but we won't know until he tries. The nurses told him the way it was going to be. He was not happy but nothing he could do about it. He is calling us all "traitors" because we won't do what he wants. Barbara has told him she is not going to go see him unless he does his therapy. Once I left his room yesterday I said I was not going back in there for a few days. It's time for the tough love. We have been thru and listed to everything he's had to say. But it's time for him to participate in this healing and going home process. Without his cooperation he will never get back to where he was just 2 short months ago.

Please pray for:

- The wonderful staff at LifeCare

- Daddy to be a willing participant in this process

- Wisdom for the doc to pick the right drug to help with his depression

- Respite for the family

- Rest/sleep/peace of mind for daddy

Now Cindy and I are off to the beach for some walking and talking with God.

Praising God through this storm.

Fw: Just talked with Elaine...

Subject: Just talked with Elaine...

Sent: Aug 5, 2009 2:05 PM

....and she is having a tough time.

Her dad is insisting that he is going home TODAY. Elaine is trying to help with reason - he cannot even rise from the bed without help - (which is being met with VERY emotional responses) and options.

Please pray with me for Elaine. It is very upsetting to her that she can't help.

Also, please pray that the spirit of denial will be removed from all involved.

Thank you AGAIN for your prayers and support.

Standing with you,

Wayne

Sent via BlackBerry by AT&T

Moving isn't always go great

Dear friends,

I made it back from So GA, very well rested, Monday evening and spent the night with daddy. He was going great and very ready to get out of St Lukes. Yesterday morning all of his docs came in and said he was cleared to be transferred to LifeCare for short term rehab. One of the things we were waiting for was 3 negative C-diff cultures (the contagious intestinal bacteria he had) which we now had. WooHoo! Transport was arranged, we packed all his stuff, and off we went about 12:15. This is gonna be great. Or so we thought.

We arrived at LifeCare and went to room 303B. Good, a semi private room. Daddy will have someone to talk to when we aren't there. No roommate when we got there but that was ok. Barbara mentioned getting a wheelchair so she could take him on a tour after lunch and we were told he could not leave the room, he was on isolation for C-diff. What? We have 3 negative cultures. But they said since he was having diarrhea, which is a symptom of C-diff, they wanted 3 more negative cultures from their facility. Daddy has not not had loose stools, or diarrhea, since this all started with the original surgery on June 5th. Anyway, on with the day. I left to go home and sleep and Barbara stayed to get him settled and sign all the papers.

I called Barbara this morning to see how yesterday and last night went only to be told it did not go well. The facility would not let Barbara stay with him last night. He is in a semi private room with no roommate. They said she could not stay because he is in isolation. We've stayed with him almost the entire time he was isolated at St Lukes and Specialty Hospital. There is no recliner in his room and they would not let her sleep in the other bed. I's feel pretty certain daddy did not sleep any. Barbara said he finally told her this morning he is afraid he is going to die there and doesn't want to die alone.

So, he is in a room he can't leave. No going to therapy, no going to the dining room for meals, no going to sit in the sun in the beautiful courtyard his room looks out on, no going to the family room so he can have more visitors, no nothing. He wants to go home.

side bar: While daddy slept Monday night, I had lots of time to think. It's

Just got call from Barbara. Things not going well at all. Daddy insisting on going home today! House doc tried everything. On my way.

PLEASE PRAY!