Dealing with terminal illness

[allycat0303]

Well I have never gone through this, so I am hoping for a little advice.

My fiance is a little *emotionally closed* I say this in the best possible way. He feels a lot of things, but doesn''t really talk.

On friday, his father was diagnosed with chronic lymphocytic leukemia. Now this diagnosis was not a surprise to me, had chronic anemia for over 5 years, without the doctors coming up with a diagnosis. In any case, it''s a stage 3 (no real difference in prognosis in stage 3 and 4) median survival is 4 years, but VERY variable even at this stage. Can be 1 year, or could be 10 years.

In any case, my fiance just got really quiet. I don''t know what to do. I suggested he start to visit his parents more often (once a week, on sunday for breakfast) both of us have really crazy lives and don''t see our families as much as we do. I think that he knows his father is sick, it''s good for him to make some changes so he doesn''t have any regrets later on, but aside from that, I don''t know what to do for him.

Since friday, I''ve been waking up in the middle of the night, really worried about my fiance. I see him as having the possibility to really deal with this *badly* and I am trying to do everything to prevent a catastrophy.

If anyone has any advice it would be really appreciated.

 

[somethingshiny]

Firstly, I''m sorry for this news. It will be a difficult time but I''m glad to see you''re wanting and willing to help.

Having dealt with several terminal illnesses (none as close as a parent, though), my best advice is help him to have no regrets. He''s going to grieve now for the diagnosis, and again at the time of death. He will go through all the normal stages of grief, so at this point, talking about it will probably do little good.

Terminal illness is obviously very difficult to deal with, but I believe it''s a blessing in a way because you get to make sure you have no regrets. You can watch that person achieve goals (take a great trip, see a play, go on a fishing weekend) and know that they lived a fulfilling life. And, you can make sure that person knows how much they''ve influenced your life. And best of all, you can say "goodbye" the way you plan.

Good Luck.

 

[cara]

My only suggestion is to talk to him about your fears (him closing up) and ask him what he fears - he must have some things. It helps if you have some history of discussing his instinct - clam up - and working through it.

Even though it is much much worse for him, you too should be able to raise your concerns here as part of a partnership - and your concern really is for his well-being. Hopefully you carrying the start-difficult-conversation burden will help ease his burdens? And if you were just to keep quiet about your concerns, that would not be setting a good example for him...

It is also my instinct to bottle things up, and when my husband calls me on it it does usually help, even if I can't articulate things well, I feel some obligation to try talking to him and also to start organizing my feelings in a more rational way even if its not perfect and I don't magically morph into a different person.

On the terminal illness aspect, I have less advice but your suggestion is a good one. More time, quality time with the inlaws is most important so your FI doesn't feel regrets.

 

[FrekeChild]

I'm sorry to hear that. Hugs to you and your fiance.

My mom has stage 4 breast cancer. FF suggested to me what you have. He lost his mother almost exactly three years ago, so he has very specific feelings on the subject. Unfortunately for me, we live about 30 minutes away from my parents, and with our schedules (I suspect yours is crazier) it's really hard to find time to make the trip.

This is something I've had to deal with for a long time, she was first diagnosed with stage 1 just about 7 years ago, and my feelings were that she'd get through it no problem. Well, she did and it went into remission. But the cancer came back 5 years later, and now she has a very limited amount of time left.

The hardest thing about it is seeing my mother change from being this wonderful capable woman who could do ANYTHING to a shrunken shell of what she used to be. Every time I see her, it makes me hate the world for putting her in this kind of pain, and taking her dignity away from her. Every day I wonder if it's worth it for her to live like this, in constant pain, and I wish so badly that I could take it away from her, and shoulder at least a little bit of it for her. Knowing that I can't is incredibly difficult.

I suggest that your FI talk to other members in his family, and consider seeing a professional to be able to talk about his feelings with someone who isn't involved in the situation. I would also suggest trying to do as many of the things your FI's father wants to do as you guys can. I think when all is said and done my dad will probably regret canceling the trip with my mom to Ireland a few years ago when she planned it for his birthday. They both dreamed of going, but that chance is pretty much gone now.

Even if he is a closed off person, there will be tears and there will be some outside signs of distress. I've taken very well to not sleeping and literally have to exhaust myself before I can finally pass out. I think that it's hard for FF to see, but he never tries to say anything, he just comforts me when I need it. And sometimes thats what I need most.

Like right now...

 

[MichelleCarmen]

Hi,

I''m so sorry to hear about this. My dad passed away from leukemia when I was in my teens. He had an acute form, not a chronic one and died five months after his DX, so time went FAST!

The best advice I can suggest is that your fiance make it a priority to spend as much time w/his dad as he can. He will never regret having those precious moments with him and possibly supporting a change in life style that will provide more time for that will be all it takes. Possibly just helping your future MIL with caring for your FIL will be the best way of "helping" your DH feel supported.

 

[Kaleigh]

I am sorry to hear this, sad news indeed. I'd try to get your FI to spend all the time he can with his father, and to be there for his Mom. This will be a huge loss for all involved. I don't know if Hopsice is involved yet, but have found the hopsice workers to be so helpful during this difficult time. Everyone handles this in their own way. It's ok to want to be alone in your feelings. As long as he knows you are there for him when he needs to vent, to grieve to mourn or be angry, that's the best gift you can give to him....

Hugs to you!!! Hang in there.

 

[Haven]

I''m so sorry to hear this, Ally.

I agree with the others that you should try to discuss your concerns with your FI, and to try to help him minimize future regret. I lost my "second" father (the relationship is too difficult to explain here) to Multiple Myeloma last June, he lived five years after diagnosis, and we watched him turn into a shell of his old self very quickly within that time frame. For our family, we rearranged our schedules and spent as much time together as possible. We took turns going to hospital appointments, we had family dinners together several times a week, and we did a lot of visiting. It was hard, we all have busy schedules, but we did it. Near the end, I was working on my master''s, teaching full-time, teaching on Saturdays, and the head coach of the Speech Team, but I dropped everything I could and spent all of my time with my family. I don''t regret it one bit.

I do regret that I allowed an administrator to pressure me into teaching summer school that summer. I should have been there in the hospital with him when he died. Hubby (then BF) and I went there after work, but I wasn''t there when he died. The rest of my family was. I should have known it was the end, but I didn''t. I should have stood up for myself and told myself that if I lost my job because I didn''t teach that summer school class, then I didn''t want to teach in that school anyway. But I didn''t. And I wasn''t there with him when he died. I was standing in the front entrance to my school talking to said administrator about the freshman transition program, as if that means *anything* when someone you love is dying.

What I''m trying to say is that maybe you can learn from my own regrets. Maybe you can help your FI pare down his other responsibilities to make extra time to be with his father. I can''t imagine that I''d ever look back and say "I really regret that I didn''t teach that class/work overtime/et cetera". But every time I think of him, I do think "I shouldn''t have taught that class. I should have been there." And I think I''ll always think that, and I''ll always regret it.

Help him figure it out, and make time for his family. Make plans with his mom to get together. Gently remind him to call home. Hold him when he cries, or squeeze his hand when he''s refusing to show that he''s hurting but you know he is. It''s going to hurt for a long time, and I''m so sorry that you and your FI''s family are going through this.

 

[LostSapphire]

Dear Allycat:

I am sorry to hear that your FI's family has been given such difficult news.

May I offer my $0.02 as someone who has been on the receiving end of a horrible diagnosis? Maybe this can help....maybe not.

15 years ago I had a brain tumor removed. Miracles do happen.

I have now been diagnosed with another one....let's pray for a 2nd miracle.

I share that with you so you have a sense of my personal history. I won't go into it more than that, but suffice to say, a BT is one of the things on my top 10 list of awful things that can happen to a person.

Everyone who has heard those horrible words from the doctor deals with it differently.Some of us choose to 'tell' so that we can garner all of the possible support. Some people choose to not say anything....because to say it out loud makes it true. Most people fall somewhere in the middle: they're not thrilled to talk about it with everyone, but they do disclose the information to close family and friends.

The ONE THING that really hurt me the first time around, was people who acted like there was totally, nothing going on with me. They ignored the information that I was sick.

We had a lot of problems with my husband's family: when they found out, they shunned me for 6 months. Apparently God gives you these kinds of things because you're done something bad....that old judgment thing. THAT hurts like h*ll.

My husband went to talk to them about it. They told him they were praying for me. He suggested they pray 'with' me instead, as I needed to know and feel their love and support. Made no difference. They told him that being around me made them 'uncomfortable'. (*see asterisk below)

You FI may be having a hard time with this, especially considering his emotional makeup. He may kind of be in the camp of "don't say it out loud and it won't be true"....so maybe he's not at the stage where he can verbalize his feelings to his father. (And maybe he never did before this diagnosis either, I don't know.).

So maybe this "structured" visit idea is a bit premature for your FI....it might feel quite uncomfortable at this point..

May I make a few suggestions of how people dealt with me? There were quite a few (non-family!) who made their feelings known to me without saying too many words. (remember, sometimes when we start to talk about the really hard stuff, we fall apart? A lot of people avoid turning into blathering idiots at all costs...but there are still ways to say you are concerned and care enough to acknowlege that someone's dealing with a big whopping horrible diagnosis).

- letters and cards just saying 'get well' or 'thinking of you' or "you're on my mind today"
- food. People always make food!
- small kindnesses. People went out of their way to do something for me.
- hang out/have coffee/public spaces with lots of background noise so they didn't have to get too much into what I was dealing with.
- I remember one lady from my church. She was quite emotional, and couldn't look me in the eye. One day I was in the grocery store looking at soup or something...she just came up behind me and gave me one of those sideways hugs....I knew if I turned around and acknowledged her presence she'd fall apart. So we just had that hug like that and she went on her way. That touched me more than anything.
- if a person felt comfortable asking me about my diagnosis, I was more than happy to explain it. I appreciated people asking about it. It gave me a way to focus on the details of the thing rather than the big "am I gonna die" thoughts....

* Oh, and can I say one last thing: it is really hard for the person with the "thing" to spend all of their energy making sure everyone else is ok. As my husband said to his sister: "hey, you say you're uncomfortable around her??? How do you think SHE feels with the thing growing in her head??"

I hope your FI and his father find the time to reconnect as father and son, and enjoy this time when you see the true blessings in our lives and on this planet.

LS

 

[diamondseeker2006]

Oh, LostSapphire, I am terribly sorry to hear you are dealing with this a second time! I''ll pray for that miracle for sure! {{{hugs}}}

Ally, I am sorry to hear about your fiance''s dad. I think men often handle these things differently than women do. But I will tell you from my own experience losing my father to Alzheimer''s that it was a grieving process spread over 3-4 years. By the time he died, it was almost a relief. I''d say to just give him space and be understanding. This is one of those things in life that all of us eventually have to deal with. I do hope he can spend some quality time with his dad which will be good for both of them.

 

[moremoremore]

I think I know the personality you describe Ally...very much like me...it's not that I'm closed off or anything, but I don't really like to talk about certain things much..most of the time I can't stop talking ... Last year my mom was diagnosed with stage IIIb breast cancer ... I chose not to look at stage III cancer as terminal...there is a big difference between 1 year and 10 years...but my point is...it's just something I don't want to talk about...I also wouldn't appreciate anyone trying to get me to change my relationship with my mom...now is not the time for you to push your husband...while you can make a suggestion, he's an adult and will have to deal with this in his own way...Best of luck... If it makes you feel "better" my husband's father has had cancer 3 freakin times (2 lymphoma 1 prostate) and he's a horse still going strong.

LostSapphire...I'm SO sorry to hear of this..I wish you all the best....some people are just selfish idiots but most people are just a little stupid LOL and don't know what to do e/t they are all surely thinking of you... I wish you the best..

 

[allycat0303]

Thank you for all of the advice! My fiancé went to see his father on sunday (I just wanted to note that they are VERY, VERY close. They have an excellent relationship) but we have crazy lives, and we rarely spend any time with our families, although we ALWAYS say we will visit on the weekend, something always comes up. We always SAY it will be our priority and then we never make it a priority. I think it is good for me too. When he goes to visit his Dad he`s going to drop me off at my grandmother`s house so I can spend time with her. My grandmother raised me and she is 82 years old. I constantly say I will make it 1 time a week, and never do, so this is going to change everything for me too. It makes me realize that I have been neglecting the important people in my life.

LoganSapphire: I am sorry to hear about your experience! I think the main thing I am trying to avoid is to be one of those people that are kind of just distant and pretending nothing is wrong. I wish you the very best with your ongoing battle.

Freke: I know you are going through a rough time, I remember hearing about it in anothier thread and wondering how you find the strength to just continue being functional. Breast cancer is horrendous really, especially when it comes back a second time. I`ve seen a lot of patients go through it, and it breaks my heart, because it tends to be young women.

moremore: I will definitely not try to push my fiancé. I won`t do anything beyond make the suggestion. I really don`t want to be overbearing (or underbearing for that matter).

Diamondseeker: Women do deal differently, although I can`t even say how I would deal, because I have nver lost anyone. Maybe I would become totally introverted too.

Haven: I am sorry you weren`t there when he passed away. I can understand the regret, as it would bother me a lot too. I feel like it''s important for your loved ones to be there. It`s weird but I thought of it as being your last journey, so having all of your family to make the transition as loving as possible is important. But don`t blame yourself for not being there. It''s really almost impossible to predict when a perseon will leave us. You did your best *Hugs*

Kaliegh, somethingshiny, cara: thank you for your advice! It seems everyone is concerned with regrets!

MC: I do agree it can go fast. That`s what scares me. He went form a 2 negative bone marrow biospies last year to stage 3 with white blood cells THROUGH THE ROOF, and a serious anemia. That indicates to me that it may go fast.

 

[rainwood]

I''m sorry to hear about your FIL''s diagnosis. My husband was diagnosed with CLL eleven years ago and is presently going through treatment again. I''m not sure from your description if your FIL is in or will be in treatment, but there are often things that can be done. Our oncologist has indicated before that they''ve had people go into treatment whose white counts are in the 200,000-300,000 range.

I''m headed to work now and won''t be able to post again until late tonight, but if you''d like to know more about our experience, let me know. I will say that I''m surprised that the doctors didn''t pick up on the CLL earlier. It is the most common form of leukemia and an elevated white count for a prolonged period of time is what usually prompts closer examination of the blood. My husband''s was detected through a regular CBC as part of his annual physical when his white count was suspiciously high. They were able to spot it at an even earlier, pre-leukemic stage. I will also add that it helps tremendously to have an oncologist who is really well-versed in CLL specifically. It''s a disease that didn''t get a lot of treatment attention and research until fairly recently and a lot of the earlier treatment methods weren''t very effective. The 10-year median survival rate is also partly a function of the fact that CLL is most commonly diagnosed for patients in their 60''s and 70''s whose median life span was often in that same range regardless of the CLL. That''s part of the reason why CLL didn''t get much research attention until people started being diagnosed with it earlier in life.

Again, if I can be of help, let me know.

 

[aprilcait]

Ally, I'm so sorry you and your FI are having to face this. It's a tough thing to face and it's very difficult to be the SO of the person who is about to lose someone very close to him/her. You want to make it better, you want to be the strong rock for your SO, and you want to make the pain go away but it just doesn't seem to happen that way because both you and your SO are human. Sometimes you feel like no matter how good your intentions, you just seem to make your SO feel sad/angry/frustrated. Other times you feel like you're doing a pretty decent job at being there for your sad SO. And still, other times you just want a break from the frustration of it all... and that's when PS comes in handy. Every day is a little different; some are easier than others.

DH's mom just passed away this past Thursday morning after a battle with Acute Myelogenous Leukemia, as a result of Myelodysplasia Syndrome. At first - during MIL's battle with Leukemia - DH just shut down. That was tough. He was just completely closed off, would get edgy or entirely silent if I mentioned anything related to his mom or family (i.e.: mentioned visiting her, asked if his family was going to get together for lunch that weekend, etc.) and inviting him to talk about it was a no-no. He was not the fun, goofy, laid-back DH I loved... he was hurting and was a very different person. Then, later, came the lashing out (i.e.: nit-picking, starting silly fights, being a bit of an ogre). That was difficult but after venting here and gaining some good perspective, I was able to act like rubber and let it bounce right off of me.

Now, DH is better. He's still sad about his loss (understandably) but the closed-off DH and the ogre are gone.

Your FI just found out about this right? If so, he's probably going through the first tough parts of recognizing the possible storyline... and he's not liking it. Likely, his behavior will calm down in a few weeks (yeah, I know that sounds like an impossibly long time to you right now). If it doesn't perhaps he'd do well with counseling... if he believes in it. Would that be a possibility for him?

Again, I'm sorry you're going through this! **hugs**

 

[Independent Gal]

Ally, I''m so sorry to hear this. I think you''ve got some really good suggestions here. And I just wanted to second some of what Lost Sapphire said (Lost Sapphire: I''ll keep you in my thoughts and prayers... here''s to another miracle!) because I''ve been experiencing many of the same phenomena with the deaths of my sons.

So that gives me an idea: maybe you can lead the way by doing things for your FIL and MIL: help out, say the right things, keep them company, write cards, be there for them. Invite your fiance to join you in these activities, and see if that helps?

I also think just saying to him "I''m here for you when and if you want to talk, or if you just want a hug." can make a big difference.

 

[LostSapphire]

Date: 11/26/2008 4:07:51 PM
Author: Independent Gal
Ally, I''m so sorry to hear this. I think you''ve got some really good suggestions here. And I just wanted to second some of what Lost Sapphire said (Lost Sapphire: I''ll keep you in my thoughts and prayers... here''s to another miracle!) because I''ve been experiencing many of the same phenomena with the deaths of my sons.

So that gives me an idea: maybe you can lead the way by doing things for your FIL and MIL: help out, say the right things, keep them company, write cards, be there for them. Invite your fiance to join you in these activities, and see if that helps?

I also think just saying to him ''I''m here for you when and if you want to talk, or if you just want a hug.'' can make a big difference.

DITTO Indy.

Hi Indy. Thanks. I''m sure you don''t have a lot of "extra" energy to give away to me so I really appreciate the thought.

LS

 

[rainwood]

Ally -

One of the things I think you''re in a unique position to do is to help your future in-laws (and your fiance) sort out all the medical information, do CLL research and explore options. We made sure we were very well-informed after my husband was diagnosed, finding out who the experts were, what the latest developments were in treatment, what questions to ask, etc. I strongly believe my husband got and continues to get better care because we educated ourselves. With your medical school training, you are in an even better position to help them make sense of all this.

 

[jbazz]

I am much like your husband, I isolate myself. If it were me, people hovering or trying to have conversations with me while I am withdrawn would drive me crazy.

As for what you can do, I say just leave him alone for now and when he feels like opening up, then you can listen. I would personally caution against trying to "help" him work thru this. If he needs you, he will come to you.

Many times us women get nervous when men stop talking. We tend to make matters worse by trying to engage them when they need some time to themselves and their own thoughts.

But this is just my opinion, you know him best.