Susan

May 10, 2006

go with your heart-

May 10, 2006

Have you been in touch with a social worker? They are often a wealth of information regarding home health visits- so that you have help-The hospice nurses should be able to give you info on different community services that might help-(they usually know waht medicare will pay for or private insurance if he has it)

As far as work goes- can't you talk to your boss and take a few days off.....

It all seems overwhelming right now but it will work out-

We had Rachel at home- her hospital bed was set up in the livingroom so that she was in the middle of everything going on - (we didn't want her to be feel removed) - it made it nice for visitors too-

Take a deep breath, count to ten- this will all work out-

May 10, 2006

bon Voyage!!!!

May 10, 2006

I agree with everyone- this is a normal response to a sucky situation ! You must take care of yourself -

Some good therapy: go out and buy about 6 dozen (or more...) eggs and take them someplace that is rocky ( I went to the beach....) and throw them as hard as you can agaisnt the rocks...- it sounds corny but I found it to be very therapeutic!

May 10, 2006

First let me say that I am so sorry that you have to go through this at all but I am so glad that you are hooked up with this group- everyone here brings a great deal of knowledge and support- it is incredible -

My personal belief is that if you feel the need to cry and tell a loved one that you love him before he dies then go for it!

There is not a day that goes by that I don't think of my Rachel and how much I miss her but if there is anything good to come from this dreadful disease it is that I had two years to tell my best friend in the world how much her friendship meant to me and how much I loved her. Many times these conversations were accompanied by tears streaming down both of our faces but it was important to me that she knew how I felt.

We often take what we have for granted and therefore don't take enough time to tell those around us how we feel-

I miss her everyday but have no regrets (i.e I should have called her last week when I thought about her, why didn't I tell her one more time that I loved her....I wish we could have laughed again about the pranks we pulled in high school...) because we went over all of that stuff in her final two years-

There is a great book that I read while going through this with my best friend Rachel- It is called "Final Gifts" and was written by a couple of hospice nurses, Maggie Callanan and Patricia Kelley.I think you would find it helpful and comforting-

Don't hold back what is in your heart-

April 21, 2006

I tried posting this a few days ago but do not see it- so here it is again - a letter from Doug's brother- He asked that i pass it along-it is a beautiful synopsis of his final days/hours-Please keep his family in your thoughts- Susan

Hi Susan,

I am afraid I have the bad news that everyone knew was coming, but hoped

that some miracle would prevent. Doug died, very peacefully, very early

Tuesday morning. He was feeling quite good, even up to the day he died, but

just kept getting increasingly weak and tired. He was up and about, earlier

in the day, coming out to join Nana and me in the living room. Throughout

his journey, Doug has always been at home with his family and when his

therapy ended last month he was able to continue living at home, with help

from some wonderful people with Hospice. The hospice team was marvelous. It is truly wondrous that there are regular people who have the capacity and

desire to ease a total strangers’ untrodden passage into death; and in the

doing, become good and true friends.

Doug had gone through several courses of chemotherapy, both with good

results and a paucity of side effects. He did tell me that the one side

effect that bothered him the most was flatulence. This just before we

entered the cabin we would share for a week, on our trip up the Alaskan

Inside Passage (I was just thrilled and told him his timing was impeccable).

It is a good thing the weather was nice, and we could keep the sliding door

to our balcony open for most of the trip.

Throughout all of the chemotherapy and radiation therapy, Doug kept an

attitude that was an inspiration to everyone who had contact with him. He

was constantly upbeat, never falling into “funk”. Early on I was worried

that he would not be able to maintain his good cheer and everything would

suddenly crash, but it never did. To the last day of his life, Doug was more

concerned about the rest of us, especially Mom, than himself. I never heard

him bemoan his fate, except to the extent that he would not be there to help

mom. Nana was his biggest concern, and before he left, he needed to know

that everything had been arranged for her care and well-being. On the

morning of his death, I had taken Nana to an assisted living facility which

she loved and where she wants to move. I told Doug all about it and how much

Nana loved it. This was the very last thing he had on his “to do” list.

Doug had been on a slow decline since his last palliative radiation, just

getting weaker, but not having any other significant symptoms. He was

finding it harder and harder to care for Nana and the rest of us were

stepping in to help more and more of the time, but he was still definitely

in overall control. (I don’t think he fully trusted us to think of all her

needs). Things were going along pretty well until the last weekend. By then

he was noticeably weaker, and was getting confused at times. He no longer

wanted to eat, but would still take the high calorie liquid supplements and

juices. He spent most of his time in his room, but did not want to be in

bed. He thought if he got into bed, he would never get up again. As it

turned out, his instincts were correct.

My routine had been to come over each evening and stay until about 11:00 pm.

In the morning I would stop by on the way to work, to check on both Doug and

Nana. Between my son Chad, my wife Barbara and myself, we had everything but

the night covered. Nana was there at night and she would have called, if

anything happened or if she needed help. With Doug’s sudden decline over the

weekend, I made plans to stay at night, for as long as it was needed.

Anticipating that I would be needed more, I had cut back my work hours, and

I did not have to be to work until noon on Monday. It was that morning when

Nana visited the assisted living facility that she loves. When Nana and I

got back from the visit, I told Doug all about the place that we had just

seen, and how much Nana liked it. This pleased Doug a great deal, but it was

soon obvious that there had been a significant change in his condition. He

allowed me to get him into bed and make him comfortable. He couldn’t swallow

his pain medication any longer, so I switched him to liquid morphine. Around

noon I left for work. Chad had taken over as Nana’s care provider several

months prior to this, when Doug could no longer do all the things that were

necessary for her care, and so he would be there to help Doug until I could

get back. By the time I got to work, all I could think about was how Doug

had suddenly declined. I knew I needed to get back as soon as possible. My

co-workers were very kind and by the time I had seen the first 4-5 of my

patients, they had switched the rest of them to their schedules, and I was

able to get away.

Doug was comfortable, but obviously going downhill at an ever increasing

rate. He was sleeping most of the time, but he would wake up when you talked

to him, still recognized everyone and could still tell me what he needed. I

sat by his bedside and talked to him, while he listened and slept. It got

progressively harder for him to talk, but he could still convey his wishes.

The morphine was keeping him comfortable and he actually declined it several

times. I was giving him some atropine, which made it easier for him to

breathe. His breathing was getting more labored as the evening progressed,

but he did not seem to notice, probably because the morphine and atropine

were making him comfortable.

All of the kids had come over during the day and had spent time with Doug.

Barb had been in and out all day, but came over for several hours that

evening and had a chance to spend about an hour alone with Doug. Nana was in

and out of his room many times, and spent several long periods with him.

Nana went to bed about 10:00, and Barb left about 11:00. After that it was

just the three of us, Doug, Alle (the cat) and me. Alle slept next to him

all night.

About 2:30 in the morning Doug woke up. I had been sitting next to him, with

his hand in mine, reminiscing about our childhood and other stories from

over the years. He would respond to me if I asked him a question, but with

his eyes only opened slightly. This time his eyes were wide open. He looked

at me and when I told him Alle was next to him, he looked at her and touched

her. For several minutes he was looking around the room, and at Alle and me.

It seemed as though he was seeing things that I could not see. As he looked

around the room, he had a peaceful, sort of quizzical look on his face.

We had squeezed each others hand many times in those last hours, but

suddenly he squeezed harder, and as he was looking at me, he tried to say

something, but no words came out. It looked like he said, “I’m ready”, but I

wasn’t sure. I leaned very close to his face, our noses almost touching. I

held his face lightly between my hands and asked him what he was trying to

tell me. Gently, his breathing began to slow, and after four or five

progressively slower breaths, his breathing stopped altogether. It was so

natural and easy, it didn’t seem at all unusual for Doug to die with my

hands holding his face, but more like the way Doug wished it to happen. By

then our foreheads were touching and I gently talked to “my brother”. I

don’t think I moved for the next fifteen minutes, but just sat there with

his head in my hands and the rest of him in my heart, and quietly talked to

him. Both of us were relaxed and at peace. Alle was curled up next to him,

where she stayed the rest of the night. I sat there with Doug and Alle,

sometimes talking and sometimes quiet, until Nana woke up several hours

later. It was a special time. We talked about a lot of things, Doug and I.

I know that you and Doug had something special between you. He spoke of you

often and with great affection. He was so happy about your engagement and

your happiness. Remember him fondly.

Don R. Russell

PS. Would you please send the message about Doug to all the members of his

support group.

April 19, 2006

I recieved this moving letter from Doug's brother Don today- he asked that I pass on the news- although everyone has heard about Uncle Dougs passing I thought you might like to read Don's letter- It reflects Uncle Dougs wonderful nature- right up to the end- I know that Don and the rest of the family are in everyon's thoughts- thank you !!