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 Main Support > Patient-to-Patient Support > Being a Caregiver

Hoda writes twice:

Reply to Question | Personal Experience As Caregiver

Reply to Question 

I am fairly new to this group and have been lurking.  I can emphasize with the sender of the email you shared.  She is in the part of her friend's life labeled "caregiver" which to me is not a good label for us.  Guess the patients say their labels are not good ones either.  I agree about some of those too.

Anyway, yes, this person's friend is in denial.  She may need to be in this state of mind at the moment to keep up her positive outlook.  If she were to know the name, treatment, etc. then she may feel inclined to research the disease.  After researching she will remember all the negative literature more than the positive.  Hard to keep positive when facing that, don't you think?  Also, if she faces it right now she might feel she will not be able to stay strong enough to see this fight through.

So, what the friend/caregiver might do is ask her friend why she does not want to know all she can about her situation.  Maybe it is just simply that she needs time to process what she has been told so far. She, as friend/caregiver, may also need to ask her friend what part she sees the friend/caregiver having in all this.  What does she expect, want, etc from her friend/caregiver.  Let her friend know she wants to know all this so she is sure to respect what her friend/patient desires.   Maybe this will open the doors of communication with her friend.

Is this normal of her friend?  What is normal for any situation especially this one?  Would it be normal if a person wants to forget about it for a time?  Not talk about it or share it with others?  I would say that it would be normal if that works for this particular person.

This is not to say there should not be limits set.  To put off grieving over the loss of your mother for over 12 or more years, is that normal?   Because that is just what I did.  It was not good for me to do that
because eventually I had to face it and it surfaced when it was tired of waiting on me.  I didn't seem to have a choice over the matter but it ended up to be the best thing for me.

In her friend's situation I would say that she will face it soon.  I bet she is already doing so but maybe doesn't realize it.  She does it when she is alone and does not have to feel she has to be strong for the
others around her.

This is a hard time for her and anyone that is sick.  It is hard for her to face the fact that she will need others to help take care of her. How humbling is that to allow others to do things you were accustomed to doing for yourself?  Just maybe remind the friend/patient that she is giving you a great gift in the process.  She is allowing you to show the love, concern, etc that you have for her.  She is allowing you to give to her rather than taking from her.  What greater gift could someone give another person then to humble themselves to be taken care of and supported.

Okay, I have rambled or as I put it "babbled" enough.  I hope this makes sense and I do not sound like a mental patient turned loose from the zoo.  I promise I am not.  I am just speaking from my own feelings of having been in the shoes of patient needing others to assist me, and in the shoes of caregiver to family members that need(ed) me to assist and or be supportive to them.  I feel honored that they allow(ed) me to have this gift that was so very hard for them to give.

What can you do for your friend?  Just be supportive and do whatever she will allow you to do.  I would suggest to at least give her a call, every day if possible, just to say Hi and ask how she is doing.  If she might need something.  Then if she sounds as if she is not up to talking then tell her to have a nice day and hang up.

This is not pushy and will surely be appreciated by your friend.  There may be times that no one calls her and yours may be the only call. Friends tend to back off when someone is ill.  I think it is because they are not sure, as you are not sure, what to do or say.  Attempt to be as "normal" as you have always been with her.

See what I said...I babble sometimes and don't know where to end.  So that said I will end here.  If this person or anyone would like they are free to contact and chat with me any time.  I will respond as soon as possible. 

Have a great day, Hoda :)

Personal Experience As Caregiver

Well, I have been dealing with this area with my brother for about two months or so now.  I am a bit ahead of this other person because my brother was diagnosed with follicular lymphoma after his surgery on 6/27/2002, not to mention having both parents pass from lung cancer, mom 1/9/1977 and dad 10/26/1998.

My brother has gone through stages similar to this lady's friend.  He would not allow us to talk about the "C" word.  In this I mean that he would tell us it was time to change the topic each time we would chat amongst ourselves and he was in the room.

It was hard on me because I am the type of person that wanted to face it head on but of course, this is more about him then me at this point.  I have to respect that no matter how hard it might be for me.  There have been times though that I just state my feelings to him and then let it go for that time.

For some individuals in my brothers shoes, I think the first inclination is to not speak about it and it will disappear.  Since having two parents pass from lung cancer which is a fast type it was hard to shift to this type of thinking and disease, slow growing type.  This wait and watch treatment is very unnerving in this case to me. ...


As for your comments to the email the lady sent, there are logical reasons we, if you mean caregivers, want to know but I think that may be selfish on our part.  This is why we must do as we are wanting them to do and stand back and give them the gift of being there but not pushing.

As for the right time, here is what I did.  I had to do something even though he would not allow it.  What I did was to call any institutes that he mentioned in passing and collect their literature.  Then after receiving each one, I passed it on to him with the comment, "Here are some brochures and such from blah blah (the name of the institute).  I thought I would share them with you.  You may put them aside for now if you wish and read them when the time is right for you but at least you will have them if and when you want to know about these places."  I left it at that and followed his lead.

My brother then started sharing more with me.  He wanted to know how I got some of them so fast.  I tried to talk with him only as far as I knew he wanted to go.  If you listen carefully you will know what their limits are.  With time he has opened up more and more.

Also, in the beginning he did not allow me to be a part of his visits with doctors and such but now I am going with him.  On Sunday though we are on our way to Houston and M. D. Anderson.  He will receive an evaluation there.  Then we or should I say he, my brother, will decide what route he would like to take.

One reason for his allowing me to go now might be because in the beginning and now I am pretty open about my feelings in all this.  I told him that I realized how difficult this must be on him but it is also difficult on those that love him to sit and do nothing.  So, maybe that is why he was open to my bringing the literature to him and now accompanying him to Texas.

... So, with all that said, I will end this now.  My best to each and every one of you that are dealing with life and its many obstacles.  Just keep a positive outlook and laugh a lot. Laughter is the best medicine if you ask me.

Have a great day,
Hoda :)

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