My Dad only a few more months left (long)

[AmyO]

I'm hoping to hear from some Adults with CF.  I can't talk
with my Dad.  It's too painful.<br>
<br>
My Dad (stepfather)  will be 53 next month.  He is
currently in the hospital he says for the last time.  He has
always been so upbeat and strong when fighting this disease.
 He has been the only father figure I have known.  He in
the past have had about 1 hospital stay a year and physically could
do just about anything.  After his hospital stay this past
December he has been steadily declining.  He really can't do
anything now, can't go shopping etc.  I have 2 14month old
twins that he can' t even hold anymore.  He in the past 3
months had gotten very angry.  He's been very short with
everyone.  Has no patience.  Has bouts of memory loss.
 He just seems confused.  It was so painful watching him
have such a hard time and to be so difficult with my mom.
 <br>
<br>
Finally, this past week he said that he's done, he just didn't want
to live this life anymore.  He severed ties with his CF Doctor
and went to his primary care physician and stated what his wishes
were.  He doesn't want any extraordinary means to keep him
alive.  His CF Doctor kept insisting on putting in a chest
tube.  His primary care agreed.  My father agreed to a 3
day hospital stay at the local hospital to do an evaluation.
 The Dr. says he has about 6 months or less to live and asked
my father if he wanted a dose of antibiotics to tide him over.
 They put in the picc line and he's getting 3 kinds of
antibiotics.  Honestly, the only one I can remember now is
TOBI, which he's always taken.  I went to visit him last night
and he was like a different man.  He was happy, cracking
jokes, still very sick but otherwise very content.  He started
giving things away to my brother and I.  Saying he was going
to stay alive long enough to get his affairs in order, and then
that was it.  I am so sad.  I should be prepared for this
and I am finding that I am not.  I wish I could talk with him
about how he's feeling about this one on one, but I can't I don't
want to cry in front of him, especially since he seems so at peace
with this decision.  I know this is very personal, but what is
your outlook on this? How would you like your family to react if
you were in my father's same situation?  I can never put
myself in his or any other person that deals with a terminal
illness shoes.  But I want to understand.  I want to make
sure that however long we have left that I am a support to him.<br>
<br>
<br>
Thanks for your thoughts.<br>
<br>
<br>
Amy O.

 

[LouLou]

Amy, I wasn't going to post becase I don't really have any experience with anything of this sort but I'm thinking most people don't so I thought I'd share this with you. I'm a big believer in 'no regrets' and I strongly feel you should talk with your dad about whatever you want to while he is here on this earth with you. I don't know if they've already started morphin on him but the sooner you can talk with himt he better before he gets too disalusioned from lack of O2 and med. side effects. It's a very special thing you're getting to experience. Try to see the beauty in it (I know that's a stretch). I don't know how old you are but think about how for generations to come people will be talking about your father and the more you can gain about his thinking the more you'll be able to have his legacy live on. Good luck and I'm glad to hear he's not as angry as he was. It's okay to be angry - you have a right to be too!

Good day!

 

[julie]

Amy, I have to agree with Lauren on a few things. I have no personal experience with this but he is your father and as at peace with his decision he is, it is still painful to you. It will only help you to talk about it with him, even if it pains him.

My husband has the same sort of wishes for when he gets really sick. He wants NO great measures to be taken. He doesn't want a lung transplant and wants to die surrounded by nature and those he loves (immediate family). It's hard for me to face, and hopefully I am years away from that, but it pains me so much now, I can only imagine how you feel going through it.

I would recommend you talk to your dad about it, tell him how you feel, how hurt you are, how sad you are. Let him know you aren't trying to change his mind, but that you want to get everything off your chest so that when he is no longer on this earth, you don't have any regrets about what you didn't say to him when you had the chance.

Hope this might help a bit. There are a number of others on this site who have lost their spouses to CF, on the top of my head I think of Allie and LisaV. You might want to talk to them too, since they have been through a loss like this, they can give you some support and advice if you are wanting advice.

I hope you continue to come here for support, we'll do all we can to help you!

 

[LisaV]

Hi,
My husband was 59 when he died. He had fought the good fight for a long long time, but had decided no transplant and no vent etc. Finally, no matter what any of us does, we cannot be immortal. The disease will get us in the end so all we can do is decide on our quality of life and the quality/manner of our death.

I don't know your dad or what he would want, but I know what my husband wanted so I'll put my reply as tho I was talking to his adult kids:

Tell him thanks for being him and that you love him.
Then tell him just what you posted here. End with the thought that you want for him whatever he wants and you want to support him in that.
Then pause a second...
and tell him you love him again.
Then keep quiet and listen to him.

Don't worry about the crying thing. Crying is fine.

Just be your loving self and real.

You can't go wrong that way....


I'll be holding you all in my heart.

Edited to add: I sat with both my parents, my sister, and my husband while they died. It was like going to the edge of eternity with a loved one each time. I will always be greatful that I had that opportunity - that they gave me that gift. Each of them was basically on hospice when they died (no last minute interventions and lots of pain management) and each died peacefully.

 

[izemmom]

Amy -

If you haven't already, please read BigBee's blog entry from yesterday entitled "A Letter to my Father." BigBee's (Mary's) dad passed away a year ago from cf. From the sounds of you post, your dad and hers have a lot in common. Her post, I hope, will help you to catch a glimpse of life on the "other side" of the tragedy you are about to live through. Mary has been my friend for a long long time. (I am the one she mentions in her post whose baby has cf.) She lived through it with grace and strength, and yes, heartache for a long time. She, I feel, has found a certain peace with the situation, in part, because her dad's death was on his own terms. I know that they used his final months to talk and grow even closer than they were her whole life. Please know that you, and your dad, are not alone. For one thing, you've found this place. We are here to help in whatever ways we can. I know you were looking to talk to adults with cf, but I hope this can help, too.

Edited to add: many of Mary's other blog posts also tell her dad's story. Check those out too.

 

[bmombtoo]

I had 3 days from the time I was told my husband would die of
cancer and his actual death. My mother-in law didn't want us to
talk about it, especially around him. I'm glad we did it my
way.....we told everyone, he had lots of goodbye visits from
friends and business associates, and we took family portraits, and
said goodbye.<br>
<br>
Be there for him and let him hear your children's laughter when he
is up to it.

 

[Seana30]

Amy,

I do not have any words of wisdom for you, but I wanted you to know you and your family are in my thoughts.

Seana

 

[BigBee]

Amy,
My heart is breaking for you. I'm glad you came to this site. I didn't know about it last year when I sure could have used some insight. As I sit and write this, I think where I was this very moment last year....at the end of the journey. Your words are so very familiar to me. I cannot begin to tell you the similarities. What a parallel path we are on, just a year apart. I knew it was different "this time", but still couldn't quite wrap my mind around that the Phoenix wouldn't rise from the ashes this time like he always did.

Once my Dad decided "his bags were packed" (his words), he really was much more at peace. He really did leave on his terms. He maintained his dignity by maintaining control of his life AND his death. He told me that no one likes to talk about death, but it's part of life. And as tough as it was to hear, he was right.

If you haven't already, read "Tuesdays With Morrie" - so much wisdom. Morrie died from ALS, but some really poignant things he said about death/dying and the process really helped me.

In the end, it gave me immense peace to know that his life ended the way he wanted it to, in his own bed on the farm he loved.

Follow his lead, if he wants to talk about dying or giving things away, let him. As painful as it is to hear your Dad talk about dying, know that it gives him peace to get things in order. Support his decisions regarding his medical care. If he says no chest tube, that's his right. Being able to control your life and your death gives one dignity and peace.

This is really long and I'm not sure I offered anything useful. Please PM me. I'd be happy to share as much (or little) information on my experience.

God Bless your family in this very difficult time.

 

[Allisa35]

Amy, I'm sorry to hear about the sadness you are going through. I don't know what kind of health situations your father has had, but being a CF patient, I'm sure that he is just "tired" of doing everything to stay alive. I've been fairly healthy over the years, and reading some of the posts on here, haven't gone through nearly as much as some other CF patients, but I can imagine that it just gets to a point where you are too "tired' to live.

I've watched both my grandmother and mother die of cancer and both were on hospice. It is a very emotionally draining experience. Try to look at it from their view; they don't have to deal with the pain anymore and all the sickness and treatments, etc. I don't want to use the words "give up", but I think you just get to a point where you say, "I'm ready to go now".

Thankfully, my husband is in pretty good health, but if it ever came to point that he became ill and decided he didn't want to do anything for it, I would probably fall to pieces. I always tell him that I want to die before him because I don't think I could handle not having him here. As far as me taking measures for myself, I haven't really thought that far ahead. At this point, I don't think I would pursue a transplant or any extrodinary measures. I'm sure he would feel the same way about losing me. We don't really talk about it much because I don't think he wants to think about it.

I think what matters most is that your father is at peace with the decision he has made. I would definitely talk to him while he is here and you are still able. Tell him everything you want him to know. Losing someone you love is never easy. I certainly understand how you are feeling as well.

 

[kayleesgrandma]

Amy, I'm so sorry to hear of your situation. I think one of the most important things with you and your father is that you get to say "good-bye". When my husband died of a blood clot, I didn't get to say good-bye. As the others have said, your father is doing it his way and on his own terms. That gives him some sense of control in an uncontrollable situation. I know you are doing the best that you can, our hearts go out to you...

 

[AmyO]

Mary,<br>
<br>
Thank you so much for your thoughts.  I read your blog.
 So many things you say sound so familiar to me.  I was
laughing out loud when you were remembering your Dad's interactions
with Medical Professionals.  I swear Dad has been through
EVERY CF Dr. in Massachusetts and Rhode Island.  He only liked
one Dr.  She was the first coordinate and run the first Adult
CF program at MASS General.  She left to go back into research
and the Dr. that took over the program had been my Dad's Dr. 15
years earlier.  He refused to go back to MASS General.
  He said "I fired him 15 years ago, why would I go
an hire him again!"  Before the CF Adult program at MASS
General he was going to Boston's Children's Hospital.  His
original Dr. which told him he'd live until "maybe 18"
has a memorial Portrait on the wall in the CF center.  Every
trip my father made to that Center my father would walk up to that
portrait and stick his tongue out and sing. . . "Nah, Nah,
Nah, Nah, Nah. .. . . I lived longer than Yoooouuu!"
 <br>
<br>
I literally stumbled upon this web site and I'm glad I found all of
you.  I may need your thoughts and advice as we mutt le our
way through.  They days are ok, unless someone asks how's it
going.  I've got my job, my husband and my twin daughters, but
at night. . . .I feel, it's almost like I'm drowning.  I'm
trying to grasp onto anything I can to keep the past into focus.
 I can't yet face the future.  Not good.<br>
<br>
Amy 35 and Daughter of Dwight, 53/CF<br>
<br>
<br>

 

[BigBee]

Amy,
I sent you a PM with my email. You can find the PM in the upper left hand corner of your screen. What similarities we share.

My Dad died one year ago today. It's still tough. How is your Mom doing?

Mary

 

[Landy]

Amy,
I am so sorry that your family is going through this. I would encourage you to follow his leads. If he wants to talk of his death then I would engage in that conversation with him. If he wants to discuss what to do with his belongings, assets, etc when he's gone, then that's good to let him discuss that too. I'm sure he wants to know that everything is in order & that you all will be as fine as you can be in this situation.
I think a lot of families don't talk about death and it is hard to talk to someone about it being close to 'their time' but it will help him with peace of mind. Tears are OK too. I don't think he would expect you to hold everything inside.
Also, you have this opportunity to leave nothing unsaid. Like Kaitsmom mentioned, not everyone gets that chance.
Please know that you're in my thoughts/prayers.

 

[JustDucky]

Amy, my heart goes out to you and your entire family...everyone has given such great advice on how to deal with your dad's declining health. From your words, it must be both heartbreaking and frustrating to watch your dad go through this. Please know that your whole family are in my thoughts and prayers. Hugs, Jenn <img src="i/expressions/rose.gif" border="0">