Welcome from a Caregiver

[bfdboston]

I was a caregiver for the past nine months for my best friend who had Stage IV nonsmall cell lung cancer. He suffered terrible from a pleural effusion as well which 3 liters of fluid needed to be drained (regularly) because it took them so long to actually give him the pleuradesia.

I can tell all of you who are going through this right now, you will have some very tough times ahead, but some very special moments as well. You will be the brunt of anger (misdirected often by many), the strength, the hope, the light, and the fight. You will feel exhausted emotionally and physically and just when you think you can't do anything more, you realize you will and you can.

Unfortunately, Ron lost his battle on August 19th. And, now I am trying to readjust myself to life without a best friend. When you are a caregiver for someone you care about, it becomes your life (with breaks, of course for sanity, but you keep on going). Then, for me, it all just was over, Ron's life ended and my life has gone on without him.

But no matter what the outcome is for you and your loved one, you will make it through this. Honor the patient's wishes, ask for help when needed, and take care of yourself. YOu will find yourself going through stages, emotions and sometimes feel overwhelmed and helpless. But know that your loved one appreciates everything you're doing. And don't forget your love one is dying, but it does not give them the right to treat you without respect.

Terminal illness can trigger some very extreme emotions from both the caregiver and patient, but you need to always remember, if things are said which hurt you, you have the right to tell that person just because they are dying does not give them the right to treat you with their anger. They will. It's natural, but it's also important for you to let them know you are still a person and you deserve respect.

And there will be moments when you will be frustrated and anxious and scared and you will be comforted by the patient telling you it will be alright. The most important thing is to remember: your gift is the most special gift one can give. And you will learn a lot about yourself during that time, and the person you're caring for.

You will share some very special moments as well. Moments that may not have been shared had the illness not happened. YOu will see. Your faith, your spirituality, your attitude, your endurance, your will, your sanity will be challenged during this time, but you will come out a better person. Knowing more about yourself, what you can and can't do, your compassion and ability to show love to someone, help someone accept their situation and face their death with dignity, calmity and most importantly, peace.

Anytime you need to talk, let me know. I am here for you and I'm glad I am part of this community.

I'm only 33 years old, but I feel like I've changed so much during the time I cared for my friend. I wouldn't change it for the world. While others ran away, and turned their back, I stood by him the entire way from initial coughs, to work ups, to diagnosis, to comfort care, to death. And, that's something which I can't forget and neither will he. And the reward I received was knowing I helped someone I cared about deeply and would've given my life for or paid any amount of money to have back, but God works in mysterious ways and my reward will be found out at a later time, only a time when God knows.

Thank you.

[atmywitsend]

You said it all. You wrote my book on surviving caregiving. I too lost my much loved husband Michael on 8/18. Other than a few close friends and family members who would sit while I ran the errands or occasionally took him in for a shot or fluids it was on me. And that's what I wanted it to be. I was determined to give him the very best care that I could give. He was so grateful and very often expressed his love to me in ways that he'd never done before.....like every time I walked into the room.

While it was difficult, being my husband's caregiver is a role I embraced. Now I find myself wandering around the house wondering what to do. Its empty except for me and the cat and while I'd never ask him to come back from his new Heavenly home I do miss him imensely.

Thank you for writing the essay!

Joy

[bfdboston]

Dear Joy,

My sincere condolences for your loss. I'm finding as the past few weeks have evolved, I feel a huge void in my being. I miss Ron terribly. We always did everything together; we were best friends for the last nine years. I can't imagine my life without a best friend. Each loss seems different: a partner, a grandparent, parent, sibling, neighbor, coworker. But losing a best friend, so far is the hardest loss I've endured, besides my paternal grandmother who tragically fell and broke her neck last November 5th on my niece's 5th birthday party, which, ironically, happens to be Ron's birthday, only the loss of a couple of friends and two other grandparents. (All of these losses I mind you have been nonstop since 2001).

I totally understand what it's like to love and to lose, but I keep my faith in God and knowing Ron and the rest are watching over me, waiting for me and guiding me during the rest of my days.

God bless.

Jim

[trish2418]

Welcome, Jim. Please accept my condolences on the loss of your friend.

Trish

[jeiland]

Thank you so much for giving your story, you have helped so much, and even though I am not my mother's full time caregiver (I live 2500 miles a way from her) when I am with her, I am her caregiver. You give me hope and strength, and I am grateful to you. I am sorry for your loss, but you are right, only God knows when your reward will come, and heaven knows, you desrve a good one.

[J.C.]

Thank you

for staying around to help

others.

Jackie

[fillise]

Jim and Joy,

You have my deepest condolences on each of your losses. Your esperiences will be very valuable to those of us caring for a loved one with LC. Thanks for sharing your experiences.

Susan

[ztweb]

Boston Friend,

Wow...you wrote so much that so many of us feel, as caregivers. Please know you have come to a great place, where you can find hope for what is ahead, you can see success, and you can know that you battle was not one you traveled alone.

Stay strong,

Jen

[ernrol]

Jim.

You have my condolences for your loss. I have stage IV lung cancer. I had a pleural effusion that went away by itself. The pleural was three fourths filled with fluid. You stated that “but God works in mysterious ways” This is so true. The day we are born we become terminal. You stated “And don't forget your love one is dying, but it does not give them the right to treat you without respect” In hindsight this was true in your friends case. As a cancer patient my care givers did not think that way. They all believed that I could successfully fight this. I think it is best to believe that your care receiver will be able to live with this disease. Again I am sorry for your loss. It will be hard for you to think that the person will live if you are put into this situation again. Never forget your statement “God works in mysterious ways” and it's His decision

Stay positive,

Ernie