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My brother- Always smiling...

UncleBuddy
Posts: 1019
Joined: Aug 2013

UncleBuddy
Posts: 1019
Joined: Aug 2013

My brother's nickname was Uncle Buddy (the nieces and nephews loved him dearly and felt he was their buddy). He was always smiling and always looking for a way to make you laugh. Even when he was doing treatment, he was smiling. The nurses at his infusion loved him as well. They came to his wake and cried along with me. The care he received from his infusion nurses was extraordinary. They were kind and very upbeat.

He was diagnosed with Non-Hodgkins Lymphoma in 2000 and was on a chemo cocktail called CHOPS. He beat NHL, but in 2011, he was diagnosed with rectal cancer. At first it was stage 2A when they did the resection, chemo and radiation, but within a year his CEA went up and he was diagnosed as stage 4 with mets to the liver and lungs. The CHOPS had weakened his heart a little bit, but he seemed to be tolerating chemo well for the most part. He had a few hospitalizations with clots and fluid around the heart, but he kept fighting. All the new chemo cocktails started to weaken his heart more, so he had to stop chemo. This was a few months ago. I decided to take him on vacation to PA to see the Amish and eat their food. He loved home cooking. We would go out for lunches and dinners. He just celebrated his 52nd birthday in June. He was my little brother, my friend. I miss him dearly but know he's in Heaven watching over us. 

Hospice was a strange experience. My sister disagrees with me and will tell you they were awesome. I think they did a great job supplying us with his physical needs like his bed, wheelchair, meds, commode, etc but I don't think we had the support emotionally and physically that we needed for him. He wanted to die at home but the hospice nurse started pressuring my sister to put him in a facility. I fought tooth and nail and refused to let it happen. It's 2 weeks today and we have not heard a word from them since his death. I feel a little bitter that we didn't have the type of support I thought we'd get.

Our aide was a blessing from Heaven. He took care of my brother to the end and he is now taking care of dad (out of our pockets this time, Medicare sucks). We are waiting for dad to get into assisted living nearby.  He is doing well. I think his Alzheimers has softened the blow for him. 

I am very sad. I miss him.

I just wanted you to see my hero, my brother, and see why I loved him so much!

Lin

Trubrit's picture
Trubrit
Posts: 5222
Joined: Jan 2013

Your brother's smile and spirit will live on; and I am sure he is looking down on you and waiting to protect you and the family in any way he can. 

I hope that dad can get into the assisted living soon. Even though your love his aide, finances will really be pinched. 

I hope you continue to visit with us here from time to time. I am glad you are my FB friend. 

You have been a blessing to your brother during his life. You have been a blessing to all of us here, with your support and love, and I would like to thank you for that. 

Cyber hugs!

SUE

UncleBuddy
Posts: 1019
Joined: Aug 2013

I'll be back. I like checking on everyone to see how they're doing.

I'm glad we're Facebook friends now. I love seeing all your pics.

wolfen's picture
wolfen
Posts: 1326
Joined: Apr 2009

Your brother was a very special soul and brought happiness to so many. I know he will always be in your hearts.

I hope you are able to find a nice place for your dad.

Hospice seems to be "luck of the draw" for our loved ones.

Please take care. Peace to you, my friend.

Karen

UncleBuddy
Posts: 1019
Joined: Aug 2013

We found a great place for dad which is right near us. It's beautiful.

My brother was a special person. I miss him terribly.

Thank you for your kind words.

beaumontdave's picture
beaumontdave
Posts: 1069
Joined: Aug 2013

Hospice does seem to be hit and miss from stories here, it worked well for us just by doing the things you mentioned, as there were enough of us to cover the emotional, physical stuff. I hope now you get some time to just be Lin, and look after yourself...................................Dave

UncleBuddy
Posts: 1019
Joined: Aug 2013

Yes, it's time for me to start looking after myself. My life has been on hold for 5 years. First thing I need to do is to get my annual physical which is a year overdue.

All my other check ups have been on time, but I let this one slip by. 

Stay well.

LindaK.
Posts: 496
Joined: Apr 2013

What a great picture.  I took pictures of my husband's 12 Folfox treatments with him holding a sign counting down the treatments and the dates.  I can't bear to look at them now, thinking how hopeful we were back then :-( 

I'm sorry your experience with home hospice sounds similar to ours.  The facility my husband spent his last 11 days in was fantastic, it made things so much easier for me.

I'm sure your brother knew how loved he was, you did a good job Lin!

Linda

UncleBuddy
Posts: 1019
Joined: Aug 2013

I think we all had tons of hope for a while. I still think if my brother's heart wasn't so weak, we would have kept going. He was a fighter. He was a gentle, quiet man, but he let us know his wishes very clearly. I'm glad he got his wish, but it was very difficult to watch. I'm sure the facility would have been wonderful, but I promised him we would do everything in our power for him to die at home.

Thank you for the encouragement. Sometimes I find myself second guessing some of the things I said or did. I know I did my best, but then I think maybe I should have done this or that.

I feel like his oncologist wrote us off once the chemo stopped. His nurses from the infusion center were at his wake crying. While i wasn't happy with his hospice care I was very happy with his palliative care nurse. 

This picture makes me cry because his smile was always there, no matter how crappy he felt. I'd spend time with him during his chemo treatments sharing pictures and videos of my grandchildren. How he loved his nieces, nephews and great-nieces and nephew. He had a heart of gold.

Cathleen Mary
Posts: 827
Joined: May 2011

Thanks so much for sharing your brother's story with us.  Love the pic. You were a blessing to him. 

I, too, had a not so good hospice experience with two family members.  Never again. 

Wishing you much strength, consolation, and good memories.

hugs,

CM

UncleBuddy
Posts: 1019
Joined: Aug 2013

I'm sorry that you also had bad experiences with hospice. His physical needs like the hospital bed, wheelchair, etc were all met, but otherwise, we were alone for the most part. Our aide was an angel from Heaven. When he first walked in the door, I thought it was going to be rough because he has such a strong accent, but he was exactly what we needed.

Thanks for your kind words. Sometimes I think maybe I should have encouraged him to keep fighting and try the lower dose of Lonsurf. But I think he was too tired and didn't want it anymore. We thought he'd have longer and were surprised that he went downhill so quickly. I'm glad I spent so much time with him. At times it caused a little friction on the homefront, but we survived. 

Peace!

UncleBuddy
Posts: 1019
Joined: Aug 2013

I appreciate all of your kind words. I am still having a really hard time. I miss him so much!

I should tell you, the palliative care nurses were awesome. I was able to call our nurse day or night and she would talk me through anything. I wish she was the hospice nurse, because I found the hospice nurse to be cold. I made a promise to my brother that he could die at home and I wasn't going back on my word. I just felt that we lacked the support we needed. Now we have dad who has Alzheimers and can't live on his own. We hired back our aide, but it's costing $250 a day. I don't get how this country can treat their elderly so poorly. Because he is healthy. other than having Alzheimers, they are giving me a hard time about paying any of his aide's fees. 

On a more positive note, my daughter is having another boy in Novemeber. This will be my 4th grandchild. My son has 2 girls and my daughter will have 2 sons. My youngest is single and still looking for the right guy. She's having a hard time in that department.

Thank you all for your constant support. I'd come here looking for answers or just a word of encouragement and always got what I needed. I never thought I'd have to be here but having all of you as my friends meant the world to me. If any of you want to be Facebook friend, PM me. Sue, I hope one day we can meet. You have been such a positive influence in my life. Thank you.

 

John23's picture
John23
Posts: 2140
Joined: Jan 2007

Elderly woes

Re:
"I don't get how this country can treat their elderly so poorly."

It's not the country, it's the political party.

I hate to get into political opinions on a forum designed for all people, but this country was intended to be "for all people".

It's unfortunate that some of political orientation feel that anything that serves "all people" is somehow socialistic and "entitalistic".

The original Tea Party was all about taxation without representation; taxation without knowing where your taxes were being spent. It was also to demand that tax dollars would be spent to better our nation; to see a return for what we are paying for.

Somehow the notion that we are all "entitled to see something back for our taxes has become a "bad thing", and we're called "Liberals"; individuals looking for a government handout.

We are ENTITLED to a return. It doesn't matter if it is to each of us, or a neighbor that needs the help, we are entitled to see a return.

And to some of specific political influence, that is a bad thing..... some sort of lazy greed. Entitalism..... "Terribly bad; believe me; no good; lock her up"

The Affordable Care Act (ACA) or politically referred to as "Obamacare" has helped us all. It could have helped more if political obstruction hadn't changed the legislation in an attempt to cause it to fail.

That's the way it is lately in the USA... and it's too bad. Our Nation was designed to afford compromise; to allow all citizens to be represented. Somehow that's changed lately and become a demand for: "my way or the highway".

Like cancer, be patient and have faith. Things will change.

(hopefully for the better)

Be well; best wishes,

John

 

UncleBuddy
Posts: 1019
Joined: Aug 2013

I totally get what you're saying. I won't get into my political views, but I think it's disgraceful how there is such disparity in this country. The very rich and very poor get taken care of better than the middle class. My dad didn't qualify for any of the senior housing because of his income, but he didn't have enough to live in one of those premier senior residences. There was nothing for the average Joe. We are putting dad in an assisted living nearby and are hoping that he qualifies for the VA assistance since he's a WWII vet. Time will tell.

I do hope things will change for both our country and cancer. We need a cure already.

Stay well.

MS2014
Posts: 59
Joined: Feb 2016

Hi Lin

Thanks for sharing your memories. Missing him is a part of life. I feel so srry for you loss

Your brother would be proud of you. Evereyone here is proud of you.

I wish you have a great life after this long battle. You deserve the best

 

 

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