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Caregiver Advice

Vickilg's picture
Vickilg
Posts: 281
Joined: Jan 2011

So my cancer is spreading. Doctor still feels that I can get this into remission or at least that's the goal. In my gut I feel like I'm going to be okay and will be around for a long time. My husband in the past always knew I would beat this and when I would talk about possibly of not making it he would beg me not to think like that.

Here we are with the cancer progressing and for the first time I can see in my husbands face that he doesn't think I'm going to make it. I told him I would and he is praying I will but I see his confidence is gone and he is very scared.

It's taken him three years to realize I may not make it. I need advice. Do I console him that it might be the case or do I reassure him that I strongly feel I will be okay. I don't want to give him false hope but did tell him I was planning on fighting as long and hard as I could. It's just so hard seeing this new acceptance of reality on his face. It makes me feel like I am being naive.

abackhou
Posts: 77
Joined: Jan 2012

Vicki,

I fully understand how you are feeling. You are not being naive but perhaps you are afraid of accepting the future. My wife (carer) at first thought I would 'beat' this disease. However, myself being DX Stage 4, felt at the onset I knew I would not reach 60. And now after many setbacks from bad scans, we both communicated openly and discussed my early passing. It was very distressing, but we cried and laughed together many times. Now we have both accepted that our time together is very limited. How long, we have together after 40 years of marriage we don't want to know because we are really enjoying every moment and everyday together. I feel the last 40 months being constantly together has been equivalent to a lifetime of working and coming home every night. Like all of us, I'm sure you will fight your disease the best way possible in accordance with your own beliefs and wishes. From my wife, who agrees with my above comments, she says quote " you may be wasting your life away worrying about it , just enjoy every moment and everyday together" unquote.

Remember "Miracles do happen'

Andrew

PhillieG's picture
PhillieG
Posts: 4679
Joined: May 2005

Dying from Cancer...
We never know what will happen...
-phil

Varmint5's picture
Varmint5
Posts: 384
Joined: Feb 2012

Vicki, I can give you my perspective as the "caregiver." (I am the mom - actually her husband is the primary caregiver.) I was so afraid and I know everybody sensed it, as you do in your husband. My son in law called me on it. I've had to change my thinking to change my "countenance" and it's been hard, because the fear is still there.

I understand your perspective as well as your husband's. You have a strong will to live - I don't know that I would call it "denial," but denial is an effective coping skill. You still have hope. Your husband is just afraid.

Maybe you two could have a real heart to heart and both acknowledge everything that you feel. Let your husband express his worst fears and get it out in the open. Acknowledge that it could happen - anything could happen to either of you. And he could acknowledge that remission is still possible and could happen. Talk about all the potential "what if's" - talk it all out, both of you make all your wishes known to the other, let him express his deepest fears and get it all out instead of letting it bottle up. I believe if he can find an outlet for his fear he can begin to let some of it go and get back in the battle with you.

So yes, I think you should do both things you ask about - console him and reassure him. And he should do the same for you. Hope is hope - there is no "false" hope. I don't think you are being naive. You are being a fighter for your life and keeping hope alive. That is strength, not naivety. Hang in there and best wishes for you!

Sandy

Momof2plusteentwins's picture
Momof2plusteentwins
Posts: 467
Joined: May 2012

From one Sandy to another Sandy well said, I need to take your advice too.
Sandy

danker
Posts: 769
Joined: Apr 2012

Sorry for your troubles. Nothing I can add to what has already been said. Best oh luck to you!

here4lfe
Posts: 296
Joined: Jan 2010

This is hard stuff, and I think there are no rules.

Yes, Cancer Sucks.

steveandnat's picture
steveandnat
Posts: 887
Joined: Sep 2011

My wife and I speak in terms of "what if" something happens to me. This is important to realistic especially for my wife's future. In some respects as weird as it sounds we are more fortunate to prepare for our passing than those who pass suddenly from heart attracts or accidents. We don't dwell on it but we will talk about it. I will bring it up like " if something happens to me". I know this isn't easy and I pray that we all make it through these hard times. Jeff

Lifeisajourney
Posts: 217
Joined: Apr 2010

he cooks now, does much...we know I am not going to live forever, but we take solace in the fact no one is...he has a heart condition, thought I'd surely be gone by now, but guess what, now I worry he might beat me...if it wasn't so sad it is almost funny. When I refused chemo everyone thought she's a goner, but almost 15 months later I am still here. What we have learned is that we get sad at times, but we are so happy for each day----for both of us. We are 69/72 but we are still thankful for each day...it is rough but after a while we find that we have accepted what is to be is to be......we have good days and some bad, but we survive.....we wish the same for you. Pat

steved
Posts: 836
Joined: Apr 2004

I agree with much of what Sandy posts above.

It is strange that it takes us getting to extreme situations before we are willing to have these conversations. For all of us when we are diagnosed there is a part of us that fears it will kill us and knows that is a possibility.However, we cope with it by pushing that aside (denial of that possibility) and that helps us get through. However, there are points in this journey where that is no longer a healthy strategy and we have to find a way of tolerating that thought being present and accepting it. Continued denial in that situation prevents us getting to a point of accepting the reality we face.

I have been there when my team said there was no longer a curative option. I believe there are many stage 4s here who are in similar positions and each copes differently. Our own approach was to allow ourselves some time each few days to talk about the hardest realities- my death, what would happen after that, how to talk to the kids, practical issues of things like money etc. It was horrible and we cried a lot but it helped enormously to get closer to a sense of acceptance of our situation.

Having those conversations and accepting that there is a significant possibility (maybe even probability) this cancer may kill you in the not too distant future (Sorry, scary things to write) does not negate hope. You can still hold to hope of remission, new treatments arising, long periods of stability etc. You have to allow your mind to accept both the reality and the hope- it isn't entirely one or the other and that is true for your husband- just because he may now be accepting you might die doesn't mean he has given up hope you won't.

It also means you focus the mind on the here and now. As I have written before, in these situations quality of every moment becomes tantamount. Things you want to do together need to be given priority and procrastination goes out the window. In opening your mind to accepting the reality of an imminent mortality it really helps you realise what is important to you.

These will be some of the hardest converstaions you will ever have. But both of you walking around the house worrying what the other is thinking is not healthy. As a carer he will feel he isnot allowed to voice his fears because that will mean he has 'given up' which is something a carer is never meant to do. It means nothing of the sort- it simply means he is being realistic. You need to give him permission to be honest with you.

Talk, communicate, cry but most of all be open with each other. It will help you both in the long term.

steve

JayhawkDan's picture
JayhawkDan
Posts: 206
Joined: Apr 2012

and good information. Stuff we all deal with, and it's good to read how others handle it. My wife and I have hope, but I also feel an urgency to get things done. I want the house to be in good shape if things go south, as well as all aspects of our life. I think mainly about her, my daughter, son-in-law, and our new grandson (pure joy!). I want them to be in as good a place as possible -- physically, emotionally, financially, etc., but I know you can't make it easy -- just do the best you can. Hugs to all. Dan

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