thank you harp & hope. i feel your loss & take comfort in your story. i so appreciate you taking the time to add your thoughts

 

Carl,

I am truly sorry to hear about your Nancy. Feelings of love and of sorrow are what makes us human beings. They are the ties that bind. I am not a religious person and my belief system is simplistic to say the least. Love is the only right and hate is the only wrong- beyond that everything else is just a shade of grey. The cultural flavor of the day so to speak. Not to make light of your financial situation, but I believe it to be incomparable to the life experience you have shared with Nancy.

So why am I here writing at 1:00am June 18th, Father's Day in a forum I have only accessed like twice in the last 4+ years? I have know idea why I clicked into this forum but I have a very clear idea of why I clicked on a thread named Hospice.

My dad passed away two years ago(7/26/04) at 89. He went through hospice twice. They are the most wonderful people. True heroes, saints and angels all rolled into one.

In April 2004, his health failing, hospice was called in. I was in Canada on my way to ski Mt Baker, Wa but there was too much rain so I bailed and stopped by my sister's place in Mt Hood, unannounced of course. Within two hours of arriving at my sisters she got a call from my Mom about my Dad. She was looking for support and hoping my sister could get in touch with me. I wasn't scheduled to be back home in the SF Bay Area for another two weeks. Needless to say I made it home in less than half a day.

Dad was not doing well at all and Mom was "paralyzed" with grief. I am so thankful there are people in this world willing to come into a family to perform the essential duties needed to maintain dignity and respect for the patient as well providing support for other family members. For two months it was very touch and go, but then in June he showed a little improvement. A little bit of an appetite. He started getting out of bed with some regularity, even if it was to just sit on the porch. A couple of times he asked for a drink- whiskey of course. At first we said no but then we realized "what could it hurt".

Here hospice is for a maximum of 90 days - it can be extended if conditions warranty it. At 80 days a supervisor came to check on Dad's condition. At 85 days the supervisor came again and said hospice would be ended at 90 days. At 90 days Linda, Katy, Evan- and two other nurses whose names escape me at right now- came at different times to say goodbye. At the time I was almost glad to see them go- not in a mean way but it meant Dad was good enough to get by without them. That was a Friday.

The following Tuesday hospice was back. Dad had taken a turn for the worse and was put on oxygen. A hospital bed was brought in- Linda said he wouldn't be getting up anymore. I found a neighbor to help me carry dad downstairs. That was tough as he had always been so self sufficient. The stubborn mule managed to get up for a few more days- almost exclusively to use the bathroom. As heavy a time as that was there was some comic relief. Like when my mom was feeding him and I looked down to discover her standing on the oxygen tube. Or another time, after I had started spending nights there when dad was still insisting on trying to get to the bathroom instead of using the bedpan. I would sleep upstairs and my mom would just hit the "find" button on the cordless phone to alert me to come downstairs and help dad to the bathroom. I guess I was taking a little to long one time and, with a vitality that completely surprised us, he yelled loudly for me to "hurry up and get down here". Many of the times I helped him to the bathroom he did have an accident on the floor. You think how awful it would be clean up after someone and then you find it is nothing- not even the slightest bit of trouble.

Soon enough he didn't have the strength to get out of bed. My sister, a nurse, came down from Oregon and my brother finally called back- he is a free spirit and sometimes will be out of touch for a year or more- and soon came in from Las Vegas. Halving my brother and sister there was such a great relief as my mom and I had been on the clock for 24hrs a day and physically we were wrecks.

Within a day or so he couldn't lift his arms to pull the oxygen tubes out anymore. Another 10 days or so like that and then he slipped into a comatose state. This lasted 6 days. He passed away at 3:30am on 7/26/04. We scattered some of his ashes at sea and I took some to the top of Half Dome in Yosemite. Both places he had been in his youth.

Carl- I do not know you but thank you for letting me share this with you.

Love,
Tim

PS- in the morning my wife is sure to ask why all the kleenex is in the garbage. I think I'll just hug her and show her your post.

 

pilot10..
i lost Nancy 7 june but the Angels of hospice were here with us. your story was great & inspiring. thank you for sharing it with me and others. God bless
carl

 

Carl,

I've never met you or Nancy, and yet I feel a sense of loss over this. My hope is that one day I can meet you personally and you can tell me some wonderful stories about Nancy.

Thank you for sharing your love of her with us,

 

ken, thank you for those kind words. i too would enjoy the ability to share those stories, some humous, some just damn sickining from the time she was sick.
maybe i'll hit the lottery soon and recover from this financial disaster and be able to travel. 'till then, thanks again for this forum that brought me some relief during tese past 15 mos.
carl

 

New to board but read this first as requested. What a remarkable surprise topic. My heart is with you, Carl. My grandmother fought a long battle with cancer when I was child in the '70's. Prayers to you and your family. There was no hospice then, her husband faced the trauma of watching her go on his own.

My grandfather (other side of the family) was diagnosed with Parkinson's about 15 years ago it must be now. He was living with it very well for most of that time, but about 5 years ago he was hospitalized for an unrelated problem and didn't receive his meds or PT as ordered. They gave him morphine for a test they ran one morning and it was my turn to sit with him afterward. He was just delerious. He was never the same after that hospital stay. I kept telling the nurses I believed he was suffering a stroke, but they insisted it was side effects from the morphine. When he left the hospital, he was no longer walking. After that his decline was rapid. Now he's just miserable.

I just saw him for Father's Day last weekend. Each time I see him now I believe that will be the last. I have two daughters, his great-grandchildren, who are 3 and 7. When they are around, he focuses on them, tries to reach for them...this is one of the few instances where he seems all there. But the worst part about this disease is that he IS there, all the time, trapped. He cannot speak well anymore. He is so atrophied he has little use of any limb. And when he is transferred from chair to bed, it has become so painful for him that he screams. This is the only verbal communication he makes that is above a whisper. He cries easily when we are all there, I am not sure whether that is because he is overwhelmed by the crowd (he has 4 children, 10 grandchildren, and almost all of us grandchildren have children of our own....we're quite an experience when all together) or because he is so frustrated with his condition and not being able to participate with us more. With the communication difficulty, he can't tell me which it is, although I ask. If we're overwhelming him, I want us all to leave. If he's frustrated, I want to do what I can to help.

He told my mom a few weeks ago he was ready to go home. He told her he was ready to see grandma and his brother and be done. After this, she and her siblings agreed they would withhold most of his meds, only keep those for comfort going. One of her brothers is a physician and helped to make this decision. He is DNR. He is miserable. He's ready to go home he says. They're letting him go.

His in home hospice care-takers are so remarkable. He has lingered so very long in hospice care (nearly 2 years now). The same faces have been there day after day all this time. Our family takes turns with the night shifts, but hospice comes while we are at work to help his wife. They supported, quietly and anonymously, the decision the kids have made.

It's been such a long road. It's so very hard. I do not see hospice care as giving up. I see it as finally offering him back some of the dignity this disease had robbed from him. No more poking him with needles, no more hauling him to the hospital, no more telling him, "Well, Mr. Sawyer, that medication just isn't giving us the results we hoped for. This other medication has even more horrific side effects, but we're going to load you up on it and continue to prolong a life that you are exhausted of. What do you think? Are you game, pah'dnah?"

I hope he goes soon. I hope his pain is over soon. It's just too much for all of us, and most especially too much for him.

Thanks for a chance to share. What a wonderful welcome to a forum where you would have expected to find anything but this topic.

Shannon (Mrs. Saturncrawler86)

 

i've never seen a person that suffered from the full circle of something fatal.all i know is that it takes a lot of power to overcome and adapt to the unkown we venture into.laughing is a good way to make your body fight something negative on it or in it.i always could cure a ear ache by laughing at a cartoon on t.v.there is alot of negative energy that a person could easily become pulled into and become sick in many ways if you let it.you have to let it pass around like a white water rapid ride.bouancy is the positve factor in the water.in life for us the past earth has many foul occurances that have passed but still lingurer and a person that is not equiped with dark force management,they could be positve about the negative and not even realize they are hurting everyone by ignoring history.to understand the end is not hard look at everyone else don't they know what it is.do you?our eyes are activated by energy we think of,so is a person who lies to themselves blind when they look,and infected by foulness,and is a person who uses truth able to speak truth.either way it is a give and take.anyone could go either way at any time.the past does predict the future that is for sure though.

 

saturncrawler86, thanks for that story. it reinforces my appreciation for hospice.