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dad hovering between reality and denial about his health

dearfoam's picture
dearfoam
Posts: 82
Joined: Apr 2011

Taking dad for a followup with his Onc tomorrow. Finished round 3 of 160 mg Temodar (3 wks on/ 1 off) which is treating stage 4 melanoma with numerous lung/ brain mets. During the first week of the last round I had to take him to ER for chest pains. Not his heart, best estimate was tumor pain. (Had been very lethargic, weak, etc since May.) And I use "treat" that way dr used it, as in helping slow tumors down, but not curing the cancer. Late June scans showed tumors slowed down but not shrinking.

Went to a followup the next week with the same dr we will see tomorrow. We had talked privately; I had asked about hospice and if it might be time. He told me dad has bleak prospects for 4-6 months from now. He said to go off chemo would be medically sound since it won't improve much. We upped his steroid, put him on 20 mg lexapro and continuing 5mg ritalin/x2 day. 2mg steroids really perked him up - he is so much more talkative and even getting up frequently to move about the house. 3 weeks ago that was out of the question - he barely wanted to move unless he had to. seemed very much like a stroke patient as his brain is so affected. anyway, he had been on steroids almost the whole time since early April but weaned down to 1mg. now they seem to be helping a lot more. problem is that dad seems to really think that he is "getting better" as in beating cancer because the effects of appetite, energy, comprehension are a nice change.

not sure what to ask the doctor to tell him tomorrow. when dad is on the phone now he acts like hes just waiting this stuff out. i have had several conversations when he is more lucid and seems to understand that he needs to wrap up chemo, needs to focus on living, needs to enjoy his life. but he tells other people how he just is waiting to get back to work and move several states away. he has trouble communicating, obviously, but i want him to be able to make a bucket list or something to tell us what he wants. its just so hard listening to him talk about going back to work and have just been talking with secretary who packed up his office, personal belongings, etc, as we all know he cant go back.

he was so bad for these past 4 months. we are happy the meds give him a little window back to life, but just wonder for how long til the pain comes on and he cant feel good. do i go ahead and ask for hospice so they can all get acquainted while he's sort of himself? i had someone from a hospice come a couple weeks ago just to explain what hospice is. i dont want to scare him or make him feel any more out of control than he already must feel deep down - though he will not talk about it with virtually anyone. i know he knows more than he lets on to his friends, but it's difficult because I don't know what he really thinks.

my emotions are just a mixed bag.

Barbara53's picture
Barbara53
Posts: 659
Joined: Aug 2009

My mom is late stage ovarian cancer, and I've watched how steroids make her feel so pumped up that it reinforces her denial. Let it go. I've also listened to how she's going to get stronger and last week she was dropping hints for me to take her on a trip -- this from someone who is gray with exhaustion after a quick trip to the drug store.

You are doing all the right things, taking care of the details of wrapping up your father's life without involving him. It takes strength to be a good mama to a dying parent, which is what it feels like to me.

Do you feel the time has come when you need expert help? If so, call in hospice again and let them start helping you, right now while your father is alert. The steroids won't last long and he'll need pain management and comfort care from people who know what they are doing. Short of that, a friend hired private duty nurses with hospice experience for $15 an hour to help with her mother, whose denial was so fierce that she refused hospice services altogether.

palmyrafan's picture
palmyrafan
Posts: 398
Joined: Mar 2011

I will try to answer this from the patient's point of view. I have brain cancer. I have already been told it will kill me; when, we do not know. But I live my life like every day is my last.

Your dad IS in denial. He knows what is going on with his body more than you think he does. We can't have cancer raging on within us and not feel the side effects; steroids or not. The steroids may give him energy, increase his appetite, etc. but they can also cause other side effects too, which it sounds like he is willing to trade off for. Regardless, he has heard what the doctor has to say, he is just choosing to ignore it, for his own reasons. We've all heard the horror stories and we have all heard about the patients who have beat cancer. There is nothing wrong with your dad believing he will beat his. It gives him a goal, a sense of being in control and a sense of normalcy. "Someday". Trust me, one of the worst things a cancer patient hates the most is losing "control" of their lives and losing control of their sense of normalcy.

I agree with Barbara. Talk to his doctors and contact hospice again. At least get everything lined up for when your dad really does need their expertise and care so it isn't nearly as frightening for him. I would also continue to try to get him to express himself about his bucket list. There will come a time when the reality of what is going on will truly sink in for him and then it may be too late to enjoy what time he has left.

Thank you for being a wonderful daughter and caregiver. A caregiver's role is never easy and many times you feel unappreciated and taken for granted. I can assure you, you never are.

Peace,
Teresa

dearfoam's picture
dearfoam
Posts: 82
Joined: Apr 2011

About to go to the dr.

I found a movie at the library called "Bucket List" starring Jack Nicholson, one of his favorite actors. Maybe this will help!!

And that first day back on steroids, he watched a documentary about Stone henge and told me he's like to go there, which unfortunately is probably not the most practical trip...

Thanks!

palmyrafan's picture
palmyrafan
Posts: 398
Joined: Mar 2011

That movie was amazing! My husband and I watched it and we immediately decided to book a cruise to Alaska a few months later. Not only did we go, but we went 2 years in a row, with slightly different itineraries. We are also planning to go on a repositioning cruise from Miami to L.A. through the Panama Canal for 2 glorius weeks next September (our 20th anniversary). My doctors think it will be good for me and have given me their blessing to go.

Remember too that sometimes cancer patients measure success differently than the caregivers. Sometimes, success is simply deciding what to wear for the day or what to have for breakfast. It can be deciding to go to church or temple, or it can be simply to sit outside and enjoy the scenery. I'm sure your father has given you some clue already, although neither one of you may have realized it. Talk to his friends and see what they think. He may have confided in them what he truly wishes for.

Good luck!

Blessings,
Teresa

dearfoam's picture
dearfoam
Posts: 82
Joined: Apr 2011

He says he saw the movie when it came out and doesn't want a rerun since I have so many other movies to choose from. I don't know if the point would hit home if he watched it again. I might sneak it in anyway if the internet is down.

At any rate, Dr wants him to continue his meds with a 4th round of temodar since we have found a balance between the tumors, chemo and steroids (+other supporting meds).

Today after we woke up, I told him to call his brother and we worked out a visit, starting tomorrow and take him for a few days! (My husband and I are excited for our first real break since mid-March, the time when this all came to light and we began caring for him). Dad seemed to get the "do it now" concept. The thing about him confiding in his friends or others is that he simply isn't. They all ask me how is he really doing, feeling, etc. They all remark about how he doesn't let on about what's really going on, how he is coping, etc., even when it's painfully obvious that things aren't OK (like he past 2 1/2 months for example). I think feeling good a for a little while is helping him to be able to think through things more, though, so who knows what he will say after a little trip away from his bossy daughter! ;)

Thanks for your insight and perspective!

palmyrafan's picture
palmyrafan
Posts: 398
Joined: Mar 2011

I think it is wonderful that you and your hubby are getting the break you need and deserve. It's also great that your dad will be visiting with his brother; perhaps he can get through to him. Sometimes, we the patients, view the caregivers as a bit bossy. My husband's nickname is "Mr. Fix-It". He's a type A personality, always wanting to fix everything, including me. Sometimes I have to remind him that this is one thing he can't fix.

If you can, find out what your dad is passionate about. I know while growing up, my dad liked anything with an engine and wheels; still does. Cars, motorcycles, snowmobiles, etc. You name it, he liked it.

As for the movie, The Bucket List? Made my husband and I laugh and cry. It also got my husband asking me, "what do YOU want to do". So we sat down and made out our own bucket lists. If you haven't made one yet with your husband, try it and leave it out for your dad to see. Who knows, it may actually inspire him. The things on the list don't have to be grand or expensive. They could be taking up a new hobby, checking out the A+ restaurant you've heard about for years but were afraid to try, checking out B&B (Bed & Breakfasts), Parasailing or Ziplining, etc.

I commend you for taking care of you dad. Sometimes it seems like a thankless job but it never truly is. You are sharing time with him that you may not have necessarily spent with him had he been well. Cherish it for the experience it truly is. However, please don't lose yourself in the process. Don't forget to take care of yourself.

Peace.
Teresa

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