Posted by WestCoastSailor on Jan 21, 2020 1:16 pm
“even if I’m dying, until I actually die, I am still living.”
― Paul Kalanithi, When Breath Becomes Air
Paul was a neurosurgeon who died of brain cancer. His wife finished his book and had it published. It did a lot for me in understanding this thing we call death. It is a hope stealer for sure. But too it can motivate us to reach for that bucket list, realizing that we don't have much time left.
In other places I've recommended that you have the hard conversations, the difficult ones. My kid told me the other day to "Shut up, you aren't dying." The grin on his face belied the deep emotion that was running through the conversation. He was on his way to a six month NATO posting. I want to be here when he gets back but I wanted to make sure the air was clear before he left in case we didn't have the opportunity to be face to face again.
In my wife's case, she wanted to tell her mother herself. We kept postponing the trip to do that thinking we had time. When it came down to it, my brother-in-law kidnapped her from the assisted living facility she was in and brought her up to the hospital. Think "The Straight Story" about an old man making a long journey by lawnmower to mend his relationship with an ill brother. In this case she had an assistant so they didn't have to use a lawnmower but still. It was the bravest thing I ever saw my wife do - telling her mother that she was dying.
Are you finding ways to reach out and spend time with him? Time off work? Face time or Skype or some other "tech reach out" way? Even phone calls make a difference.
Posted by Cynthia Mac on Jan 21, 2020 1:59 pm
It is very hard to see a parent begin to “look the other way” - away from life and toward the next stage. Huh. My screen just “went blurry” when I typed that! I know it must be hard for you, too. Sometimes, I think they’re doing the “dad thing” - trying to prepare us for the future, just as they did when they taught us to ride a bike, or drive a car. And sometimes, I think they’re doing this because they feel tired - tired of feeling sick, tired of visiting doctors. It’s probably a combination of both and other factors.
As for you, when I saw your words, I saw bravery and courage. The sheer strength it takes to “not let on” to him how much this is affecting you is a special kind of fortitude. However, even Superman (or Superwoman) needs a day off. You are wise to see the need for some “downtime,” too.
Yup. Others are feeling like that, too. You are not alone.
Posted by Cynthia Mac on Jan 21, 2020 2:20 pm
Dad is experiencing fatigue, too, but not nearly to the level you describe. My dad has had chronic neck pain for many years, and he “wears out” very early in the evening - usually goes to bed right after supper - and he’s up early, too, usually by 5 a.m. In the interim, he is up several times through the night, and each time he gets up, he has a glass of water. So, while it sounds like he’s “out” for 11-12 hours a night, it is broken sleep. Since he’s been on chemo, he sometimes has a short nap during the day, too.
Does your dad live alone? Mine does, and if he was having cognitive issues, I’d be concerned about his living situation.
The recent CT scans have probably given you some assurance that his incoherence isn’t related to his cancer so much as to his treatments. Something you might want to consider is asking the oncologist if a referral to a gerontologist would be appropriate. (That’s making an assumption about your dad’s age, and I’ve seen your profile picture — based on that, he might not be that old!)
I love your profile name — maybe I should change mine to singlecatlady!
Posted by Brighty on Jan 30, 2020 10:36 pm
And for you. You need support for yourself too and I'm going to give you a few suggestions. In this community we have many discussion groups where you can connect with others who are going through the same or similar situations to you. Under "Forums" We have a caregivers discussion, where caregivers give their coping tips. We also have a group called "Coping with a Parent's Diagnoses."
There is also an oncology social worker at just about every cancer center that you can talk to, who has experience in dealing with situations such a these. He or she will probably have many great suggestions for you in dealing with your situation.
We also have a number to call that may be better able to answer the questions that you have .
1888-939-3333. They are friendly and will talk to you as long as you need.
I would also like you to meet one of our members who may also be able to give you tips. she is caring for her dad who has stage 4 lung cancer. Cynthia Mac thank you.
I hope this helps ease some of the anxiety you are feeling. Just know you are not alone and you have the support of the community here. Thank you for reaching out, and let us know how you are doing when you get a chance.
Posted by Kims1961 on Jan 30, 2020 11:52 pm
I have had to have many "difficult" conversations in my life. Talking about cancer/prognosis/ wishes are among them. One thing that helped when my mother was diagnosed was to find a time that was conducive to having a caring conversation. I explained to my parents - that rather than "shielding " me from the truth - it was actually giving me the message that they don't think i can handle the truth ( sounds like a movie line - doesn't it!) When we were able to talk about very difficult decisions - like death/ terminal illness - I felt more prepared/in control/ able to handle what may soon lie ahead. Still not an easy conversation - but one that is worth having. I also explained that during these conversations - its ok - actually appropriate - if someone or all cry. Crying doesn't mean the talks should end but rather a release of emotion.
Not sure this is helpful but please let us know how you're doing. Do you have some good personal supports as well?
Posted by Harpohill on Mar 21, 2020 9:03 pm
My dad has just been diagnosed with Bile Duct cancer. He is 82 years young, very active and was very healthy his entire life up until 3 weeks ago when he though he just had the flu, but then he started turning yellow, so we knew something was going on with the liver. After a whirlwind of a week of tests, his diagnosis came back with cancer.
It't just me and my mom to help him really, and well she is not really able to process things well right now, and honestly, neither am I. Health issues are not new to my family, I was diagnosed with Lupus when I was 13, I am 38 now so we have been though hard times before. The thing that has us all, is that there is no history of cancer or really any major illness in his family tree. I am adopted so, I'm the exception!
Anyways, just looking for other people who are dealing with the diagnosis of a parent so maybe we can help each other out.
Posted by Lianne_adminCCS on Mar 25, 2020 5:48 pm
Thank you for sharing. You definitely posted in a great spot to find other members like you. If you scroll through the thread for earlier posts you will find plenty of people dealing with a parent's diagnosis. Both of my parents have had a cancer diagnosis. I lost my dad to it but my mom is going strong. I am also a cancer survivor so I understand this from both sides somewhat.
If you see a post that resonates with you and you want to respond to their post directly, you can type the @ sign then immediately start type their user name. A list of matching usernames will come up.Select the one you want from the list. If it worked, it will turn blue - like your name does in this post.
Let us know how we can help
Posted by jorola on Mar 26, 2020 6:58 pm
How have things been going these last few days for your dad and your family?
My dad has prostrate cancer. Luckily it is very slow growing and likely will not cause my dad many problems/complications. He is 70. My father is quite stubborn and will not let my mom or me in with him on any of his appointments with his doctor. He also treats me like i am still 7 years old and still in pig tails too (insert major eye roll). Love the man, but Lord love a duck! How's your dad about this kind of stuff? Is he open to your help?
If he is willing for you to attend appointments with him that is great! Two sets of ears are always better than one. Also if you go, take a note book. One, to have all your questions you want to ask the doctor written down so you don't forget them when it is time to ask them. Two, to take notes from the appointment so you can refer back to them any time you need to. I like the coil scribblers myself because you can't lose pages and you can fold them over easy. I learned this when my husband was undergoing treatment for lung cancer.
How's your mom? All this is so overwhelming for the brain to process and hard on the heart to process all the emotions. Does she have any friends she can talk to to distract her once and a while? Same for you? I know your love for your dad makes you want to be there every moment for him but in reality you need down time. I am sure your family has learned this while caring for you with any tough periods with your lupus.
Know you can turn to us to ask questions, vent, cry or look for that well needed distraction whenever you need to. This site is full of amazing information that you will find educational and helpful. Let me know if you need any help locating anything.
Looking forward to hearing from you,
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