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First time Caregiver.

linz1982's picture
linz1982
Posts: 18
Joined: Mar 2011

Hello. My name is Linsey. I'm a first time caregiver and have no clue what I am doing. 3 weeks ago my family found out that my Father has stage 4 lung cancer that has spread to his brain and to one of his adrenal glands. I am trying not to hover over him but its so hard. He has 2 biopsies and they couldnt get a good enough sample, so this friday they are going to go thru his chest. He has had his pet scan and his cancer has spread anywhere else but those spots. I have no clue what to do.

Ex_Rock_n_Roller's picture
Ex_Rock_n_Roller
Posts: 281
Joined: Mar 2011

Hi Linsey,

I'm not a caregiver but may eventually need care (NSCLC IIIb, approaching a year after diagnosis), and I guess I don't know that there's a magic formula. I'd follow your dad's lead. In my case, I made it explicit that I didn't want to be treated specially, but you can be there to help without hovering. Unless he's unlike most of us, he'll be happy to know you're around, even if you're not providing any specific care at the moment. Low key and supportive should work for anybody. Run interference in case any trivia comes his way, and if you're in on any of the medico visits, take notes.

All the best to you and your dad.

linz1982's picture
linz1982
Posts: 18
Joined: Mar 2011

He knows I am here for him. He is just depressed because he feels like he is losing his independence. he is also depressed beause the big tumor on his brain is causing sleered speach and his balance isnt good. I want to do so much and I truely feel bad for him. I just wished there was more i could do.

luz del lago's picture
luz del lago
Posts: 452
Joined: Jul 2010

That you are here, shows your love and concern for your dad. A cancer diagnosis is very difficult for all involved. When my beloved husband was diagnosed, our entire family and dear friends all felt as if "we" had cancer! It touches, hurts and affects everyone.

What I learned as a caregiver was that I had no power over the outcome, but how I cared for him, how I spent each day with him, how I tried my hardest to let him maintain his dignity, that was what was important in the end.

Everyone deals with the diagnosis, the treatments and the prognosis differently. My love really believed he could "beat" this. I prayed for a miracle that he would. I also listened to the doctors, researched and studied medical reports, trials and anything I could get my hands on. So you may say that I was more realistic in regards to what he had, (extensive small cell lung cancer with mets to his liver, and eventually to many bones), in regards to the prognosis. That being said, I never gave up hope. But for my beloved, the end came, and the miracle was that he did not suffer too much and for very long. He left with extreme dignity.

I personally know a gentleman that has survived extensive small cell lung cancer, had mets to the brain, for seven years now!! He was very kind and helpful to my husband, he never said any words in order to give my love hope, his survival alone, did! This same gentleman was almost at death's door at the time of diagnosis, suffered blood clots during radiation, almost lost his foot, and many more critical issues. Today, he "breaks" horses for a living!

I guess what I am saying that none of us really know what the outcome will be, not even the doctors. Most ethical and compassionate doctors will be honest but always remind one that there is always the exception. The one that for unexplainable reasons comes through, relatively unscathed!

My hope and prayers are that the wonderful survivors on this site will be the "one"!

Best wishes for your father, and for you and your family,

Lucy

hope0310's picture
hope0310
Posts: 324
Joined: May 2010

You BE there....you give your time, your love and your support. Run errands, make meals, have snacks ready, stay positive. As you enter further into the world of a cargiver, you will know what to do.

Make memories and love!!

My best to you and your dad,
ELysia

UKLady's picture
UKLady
Posts: 85
Joined: Jan 2011

hello

my name is also Lyndsey :-) welcome- my husband Steve is Stage IV NSCLC with 7 mets to the brain. All mets have improved-one has even gone - yay! my husband had lost speech and right side of body at one point- a few weeks later he was back at work- so breath- give yourself some time to absorb it all.The initial reaction is to try and absorb *everything*-not good! Everyone is different-you will soon learn that- but each day you will gain experience of your own fathers situation. Don't try and absorb it all at once. I came straight off my honeymoon to this diagnosis-and everyone here knows to a new country as well as I am a Brit in Texas.I didn't know what to do either- but here I am putting one foot in front of the other with the help of this forum and the wonderful people in it-caregivers and survivors.And I am surviving!

Soooooooooo Linsey with an *i* and no *d* ;-) baby steps- take a small step absorb and then the next whilst the medical team do their part, its going to be busy around you for a while.Buy a tiny voice recorder and listen back at a quieter time.
Being there for your Father and giving him a smile is likely the best thing you can do whilst you quietly absorb the situation.Take your time.

Kind Thoughts and very best wishes

Lyndsey-caregiver to Steve Stage IV NSCLC mets to the brain.

linz1982's picture
linz1982
Posts: 18
Joined: Mar 2011

I wanted to thank you all for responding to my post and ur prayers. We have gotten some bad news from the Dr. which is very hard on me and my mother. The dr said if they dont take the large tumor out of the back of his brain he will have a estimated time of only 3 months to live. So its a very stressful time. But i do appreciate all of your support.

Kimmiann
Posts: 46
Joined: Feb 2011

Like you, I took turns with my mother in taking care of my dad. Just let him know that you are there for him and that you love him. I know this time is very stressful for you. I am an only child and was such a daddy's girl. You will find support from the many people here and remember you are not alone.

Kim

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