Goodbye to a good man

Yesterday I had the opportunity to say goodbye to Dad. I thought that yesterday would be a good day to go see him. He’d traveled home from the Hospital on Monday and I knew he would be exhausted. I figured that Tuesday he might be a little stronger and that this would be my best chance at spending some time with him. I’m glad I made the trip.

Dad was in a lot of pain throughout the day. His burping was constant and painful. We had to help him sit up to get the gas out. He’d sit up for five minutes or so and then lay back on his pillows. Getting him to let go of the bars on the hospital bed was at times difficult. You could see him struggling to hold on to what life was left inside him. He made it to his chair from the bed and back once. It took 10 to 15 minutes for each trip.

Ma was amazing. Every time he made a noise or a move to get up she’d be by his side offering comforting words and trying to figure out how to help him. The mixed look of compassion, devotion and pain in her eyes was inspiring. She truly did the best she could for him. To the end, she was the one he looked to. Ma fulfilled the promise made on their wedding day. Only in death did they part.

I played the video we’d shot when everyone was together a week ago. It was his most lucid period. For fully 20 minutes he focused his attention on the television while images of his beloved children and grandchildren danced across the screen. It seemed to comfort him and make him happy.

In all I spent over 7 hours with him. I wanted to leave by 7:00PM so I could get home at a decent hour. At 6:35PM Ma went into the kitchen to get something to eat. I was left alone with him. For the next 25 minutes I held his hand and told him how much I would miss him that I would love him forever. He knew I was there. He looked up at me and then looked away. He squeezed my hand and rubbed it briefly with his thumb. Just before I left I told him I was proud to have been his son. I think I was speaking for all of us. I kissed and hugged him once more and then I had to leave.

At 5:40AM when my phone rang I knew my Mother would be on the other end. She said he died peacefully in his sleep. I’m glad. He had suffered enough. The curse of Pancreatic Cancer is that is takes our loved ones so quickly. The blessing is that they don’t have long to suffer and we each have the opportunity to say goodbye. A good man passed into that great beyond yesterday surrounded by those that loved him. I guess I’ll be seeing all of you very soon.

Lots of Prayers

My church (and Eileen's, too) and many friends across the world are praying for our family now, that we'll all feel the peace and comfort that surpasses all understanding. Hang in there, everybody.

I don't have any news, but wanted to share a comment that Mom made when we talked Sunday night. She said she always used to tell Dad she planned to die first so she wouldn't have to live without him, but now it doesn't look like it will work out that way. But that no matter how hard it is to face the end of their time together, she still feels incredibly lucky to have had 52 years with the love of her life. I told her she should be proud that they skewed the hell out of the divorce statistics. That made her laugh, which is all I guess we can do for her right now. Maybe she can share some funnies with Dad when he's awake. Dad always likes a good joke, a reason to smile, an excuse to laugh. I hope we all find them, even now. It's what he would want for us.

Headed For Home

I just talked to Kevin, Dad will be coming home early this afternoon. It's just a question of whether he gets there before the bed. They will be transporting him by ambulance, much easier for all concerned. Kim will be driving Mom home, and I guess Hospice will be there to help set him up. I don't know much more than that, but I'll check in with Mom this evening.
I don't know how everyone else feels, but I don't know whether I want to scream, cry, or throw up. I'm so torn up; the quicker he goes, the less he suffers, but the sooner we lose the best man we will ever have the privilege to know. Where do we go from here?

Coming loss...

Yesterday I realized that Dad is going home for probably the last time. I am sad beyond anything I’ve felt before in my life. Even when Brigette was at her lowest point, I always believed that she would recover. I feel guilty that I want his time to be short; he was too good a man in life to suffer like this at the end of it. I feel guilty that I want him to fight long enough to talk with him one more time. Andrea tells me, “You’ll always want one more time”, and she’s right. I will always want one more word, one more touch, one more smirk, one more laugh, one more wink...

Soon there will only be memories left, memories of a man that lived his life for his children, for his true love, for each of us. Yet, I still see Dad even when I’m not around him. I see him in my brothers, in my mirror and in my sons. I see him in an occasional expression and I hear him in a turn of phrase. But most often I see him in their deeds and in their work ethic. I see him in the energy they put in to their lives.

His legacy has been passed on and accepted by those of us that survive him. We in turn will pass his legacy on as our own when the time comes. Until then we can only hope to live up to this legacy of love and devotion that he has shown to us.

Headed Home?

I talked to Mom tonight. She said Dad was sleeping most of the time, which is good I guess. The combination of adjusting his diuretics and catheterization has helped reduce the fluid retention. The Doc will be in to see him and they'll decide then when he goes home. Mom said that Hospice will be there to help. They're getting a bed to put in the living room, much better for Dad's comfort. I agree with Kathy that it'll be good to have someone else there that's not as emotionally attached to help care for him, it seems that we're having one crisis after another. I just know that I'm scared. I don't want him to suffer, but I can't even think about losing him. I've got to go before I start balling again, LOVE TO ALL! Eileen

Back in the hospital...

I got a call from Kim last night. Dad was taken by Ambulance to CVH last night around Midnight. His fluid retention has gotten out of control and he was finding it hard to breath. His fluid retention is due to the kidney function problems he’s having. The Dr on the ward last night told Ma he may be on too many diuretics and that they would try and eliminate them and see if the kidneys would begin to function again.

I talked with Kim and Ma again this morning to find out how the night went. When Ma talked to him this morning, Dad said he; “had a good night”. His breathing is better but he continues to sound very weak. Poor Ma didn’t get home until 3:30AM and was up again and in the shower at 8:00AM.

Kim said she is worried about how much Ma can continue to do. She agreed to see her Dr on the 9th. Dad has an appointment then, but its not likely he’ll keep it. She will go instead.

Going Home

I've decided that there's nothing more important than the here and now, and I want the opportunity to share what time I have left with my greatest hero, even if it's as simple as holding his hand. I'll be heading back to VT sometime in the next two to three weeks. I want to hug him, hold him, and love him, just as he has done for all of us. Mom needs our support just as much as Dad, and if she wants to spend every minute of every day at his side, I'll do everything I can to help. Kevin and Kim are doing a fantastic job of supporting them, but the time has come where it's too much for them, and they need help.

Another turn of the screw...

Just got off the phone with Ma. The Kemo is delayed again. Dad’s blood work is in decline again. The Dr says his kidneys are failing. They’ve prescribed a new medication to help his kidney function. The problem at a higher level is that his body is getting nothing from the food he does eat. Dad is very weak today.

Kim and Kevin are putting a railing up on the stairs outside to help him. I asked Ma if she thought a ramp would be a good idea. She said she doesn’t think Dad will be leaving the house too many more times…

The Dr gives Dad 1 or 2 more months at the most. 2 months sounds optimistic to me. Dad still wants the Kemo. He has another appointment for Tuesday. Ma isn’t optimistic and wonders why Dad wants to try. I told her about my conversation with Dad the other night and how he said he wants go do down fighting. What else is there to do?

Late night conversations...

I haven’t had any time to write in the past 48 hours. After my trip to VT Wednesday I had car trouble yesterday and a lot of work to do. Plus we have a costume party for the whole family tonight. So here is a late update.

I spent a great night Wednesday with Dad. I left work around 4:00PM and went straight to VT. Dad looked a lot better than he had over the weekend. He seemed much stronger and less wobbly on his feet. He was able to stand up without shaking as he was before.

This set the stage for the miracle that was to come later on that night. There have been few experiences in my life that match watching my Red Sox win the World Series with the man that got me interested in sports in the first place. It really was magical. Dad caught the first three or four innings and woke up again at the start of the eighth. His smile was worth the four hours of driving and the three hours of sleep I ended up getting before finding myself home again at 6:30AM Thursday.

Ma is sleeping on the couch after Dad’s fall earlier this week. Kim tried to set up a baby monitor on the table next to Dad’s chair but it didn’t keep Ma downstairs in bed. I can’t really blame her.

I slept (tried to anyway) in the recliner opposite Dad’s. We settled in about 12:30AM. About 3:30AM Dad stirred and got up to pee. Ma was off the couch instantly to help him along. When he came back I tried to settle in again. After a few minutes I felt something. I opened my eyes to see Dad staring at me. This was what I came for. I got up and pulled the rocker along side his chair. We talked – really talked – for about 25 minutes. I held his hand in my and rubbed his back. It was great.

After all the standard lines like: I’m going out fighting … All we can do is take one day at a time … and This really sucks, he got down to the list of things that are really bothering him. His fear of the pain to come was actually low on the list. His chief fear is for Mom. He sees her exhausting herself taking care of him and wonders if it is all too much. It is, but there is no alternative really. I told him that if their positions were reversed he’d do the same for her. I also reassured him that we’d take good care of her after all this was over. He feels cheated and wondered aloud; “Why did this happen”?

I’m going to try and get back up again next week. It seems, as I expected, that the best time to have a real conversation with him is in the dead of night. I hope to have a few more of these in the time we have left.

Courage

How truly honored we are to be able to call this man Dad. He has shown us the true meaning of courage. One of the side effects of PC is the rapid change in taste and appetite. Kevin and Kim have been fantastic in running around to find some food or juice that Dad might like. If his nutrition keeps improving, the Dr will be able to start chemo, provided the clots have also improved. The day before I left for NC he'd been out to the kitchen twice, and ate supper there. I'm going to send up a butt cushion so it's more comfortable to sit. I was thrilled when he came to the kitchen the morning I left to have juice with me.
As far as the arrythmia goes, I wonder if it has something to do with Dad being in the hospital? He gets very upset and nervous although he knows that he needs to be there.
Home health will be a blessing to everyone. They'll have ideas to help improve nutrition and mobility, and Dad is looking forward to the help.
Thats all I have for now, I'll check back after Dad's appt. today.
Love to all, Eileen

Kemo delayed again

Just talked with Mom. They’re putting off Dad’s first Kemo treatment until Friday. His blood levels are still not where they need to be. To give it to him now would just be too risky.

His blood levels are better than they were even Monday though so it sounds like he is on an up swing. Lets hope it continues. The swelling in his legs is going down slowly too. Though the left is ahead of the right in this department.

I’m heading up there tonight. If all goes well I’ll get to watch the Red Sox clinch the 2004 World Series with Dad by my side. I can’t think of a better way to pass the evening. I’ll spend the night and commute to work (Salem NH) tomorrow morning.

Waiting to go home

I just talked with Mom and Dad and he's waiting eagerly to go home. The doctor may realease him any time now. His arrhythmia has stabilized and they think the adjustment in medication may work. The doctor thinks he may have been having bouts of arrhythmia at home before and no one knew. They've put off chemo for another day. Mom will have to give him an injectable anticoagulant in his abdomen every twelve hours. I squicked, but Mom said it's not bad. It's a very fine needle and she doesn't have to push it in very far.

He sounds relieved to be going home, but still very weak. Mom said they were going to start home care services, and that sounds like a very good idea.

He was actually in slightly better shape nutritionally than the last time he was admitted, which is good news. I told Mom she was doing really good work because it's been hard to get him to eat. Since he hasn't had any trouble with the fats or sugar he's had so far, they said to worry less about that and concentrate on getting him to eat things that will keep him going despite the fact that he can't eat much at a time. I could hear his smile!

Back in ICU...

I just got a call from Ma. Dad's heart rhythm went irregular this morning. He is back in ICU but doing well. We’re not sure if this is just another in a long series of these episodes or if it was a reaction to the blood-thinner. When the ICU nurse called to tell her what was going on she said Dad says “Tell my wife I’m feeling better”. I’ll update you when I find out more.

Another short stay in the hospital...

Dad was back in the hospital overnight. He was supposed to go in yesterday for his first Kemo treatment. The Dr saw how badly swollen his legs were and how generally weak Dad was, he decided to do a bunch of blood work and other tests instead.

The tests showed that Dad has blood clots in both legs that are causing the swelling. This is an unfortunate side affect of PC. They started him on a blood-thinning agent and kept him overnight for observation to make sure the new medicine didn’t cause any complications.

Depending on how his blood work looks in the morning they may also do a blood transfusion.

He’ll be released early tomorrow and will go over to the Kemo unit before coming home. Ma will have to continue injections of the blood-thinner when he gets home.

For the last few weeks, when asked how things are going, Ma responds with “FINE”. Last week I told her that I once had the word find described to me by a psychiatrist as: F’d up, Insecure, Neurotic and Emotional. She continued her characterization of how things were going until last night. She was in Dad’s hospital room when I called. I asked how things were going and she responded: “Good”. There was a pause and then she said, “I didn’t say FINE”. So I guess the time spent in the hospital has yielded some improvement. Right now we’ll take any good news.